2 0 1 5 V o l u m e 2

The Newsletter of the Lupus Foundation of Pennsylvania

LUPUS RESEARCH

INSTITUTE

Page 5

FINANCIAL

PLANNING

Page 8

LUPUS NEWS

AROUND PA

Page 10

LIFE WITH LUPUS

Page 14

COUNTY

REPRESENTATIVES

Page 18

SUPPORT GROUPS

Page 19

IN THIS ISSUE

PENNSYLVANIAL U P U S N E W S

Chronic insomnia is a common complaint for patients with rheumatic diseases and conditions. In fact, sleep disturbances are among the most common symptoms of both fibromyalgia and rheumatoid arthritis (RA), with more than 50% of chronic pain patients reporting sleep disturbances.

Pain combined with insomnia can lead to a vicious cycle, says Ruth Gentry, PhD, a licensed clinical psychologist in Reno, Nev., who specializes in cognitive-behavior therapy for chronic pain. Pain makes sleep more difficult, and sleep deprivation can exacerbate pain.

New Studies Highlight Risk of Sleeping PillsIn their quest for a good night’s sleep, it’s not uncommon for patients to turn to over-the-counter sleeping pills. In addition, diphenhydramine, better known as Benadryl, has long been prescribed in skilled nursing facilities and hospitals as a sleep aid. However, a new study offers compelling evidence of a link between dementia and long-term anticholinergic medications, such as diphenhydramine, and nonprescription sleep aids.1 In addition, a 2014 study found that older adults who use benzodiazepines (e.g., alprazolam, diazepam, lorazepam) to reduce anxiety or induce sleep are at a greater risk of developing Alzheimer’s disease.2

Evidence also links the popular sleep medication Ambien to confusion in older adults and an increased risk of falls. Another study found the rate of falls increased nearly six times among patients taking the hypnotic, zolpidem (Ambien). The study also noted that zolpidem is the most commonly prescribed hypnotic sleep aid at many hospitals and encourages doctors to consider nonpharmacologic sleep enhancements.3

Addressing Insomnia as Part of a Treatment PlanAn interview with Michael Smith, PhD, of the Johns Hopkins Behavioral Sleep Medicine Program in Baltimore, published on the Lupus Foundation’s website, reports that 50–60% of people with lupus and other chronically painful conditions experience sleep deficit. In addition, Dr. Smith says lack of sleep compromises the immune system, interferes with cognition and increases symptoms of lupus, such as pain, inflammation and fatigue. He says chronic insomnia shouldn’t be ignored, but rather addressed by doctors as part of an overall treatment plan.

“Rheumatologists know poorly controlled pain can often cause difficulty sleeping, but they often don’t think about the patient having a separate sleep disorder that might be fueling the pain,” says Terry Cralle, RN, MS, CPHQ, a certified sleep specialist and co-founder of a sleep disorders clinic in Charlottesville, Va.

For this reason, Ms. Cralle says it’s important for rheumatologists to refer their patients with chronic pain for a sleep evaluation to determine if there is an underlying cause, such as sleep apnea or restless leg

Imag

e C

redi

t: K

amen

uka/

SHU

TTER

STO

CK

.CO

M

Tips for Treating Insomnia in Rheumatology PatientsJune 15, 2015 • By Linda Childers

Volume 9 Number 26June 2014

2

LUPUS FOUNDATION OF PENNSYLVANIA

Landmarks Building100 West Station Square Drive

Pittsburgh, PA 15219

412-261-5886 • 1-800-800-5776Fax: 412-261-5365

Email: info@lupuspa.orgWebsite: www.lupuspa.org

PRESIDENTDonna Polito

VICE PRESIDENTStephen Hutzelman, Esq.

SECRETARYGail Vandergrift

FINANCIAL CHAIRJohn M. Yanak

BOARD OF DIRECTORSDon Bell

Melissa FrankoLinda Kostyak PhD

Thomas MillerKaren Pool

EXECUTIVE DIRECTORLori J. McCann

BRANCH COUNCILElaine Heufelder

Arthur Rooney, II, Esq.John Vento

STAFFMarian BelottiNancy Mimless

Shelly Tonti

OFFICE HOURSMonday - Thursday

9am - 5pm

The PA Lupus News, a publication of the Lupus Foundation of Pennsylvania.Editor: Marian Belotti

We welcome any subscriber who would like to contribute an article of special interest.

Articles published in all newsletters are of an informative nature and not meant for self diagnosis and/or treatment, nor do they necessarily reflect the views of the Lupus Foundation of Pennsylvania. Lupus varies among patients and medical management must be individualized. If any article stimulates a quest for further information, we advise that you consult with your personal physician.

syndrome. The Stanford Center for Sleep Sciences and Medicine in Redwood City, Calif., notes that there are over 100 types of sleep disorders ranging from difficulty sleeping at night to problems with excessive daytime sleeplessness.

“The diagnosis and treatment of these disorders can make a huge impact on sleep and, as a result, quality of life,” Ms. Cralle says.

Because rheumatologists have limited time with their patients, Ms. Cralle recommends they work with a sleep specialist to address any ongoing insomnia issues that their patients may be experiencing.

“We can help rheumatologists determine if the patient’s lack of sleep is causing pain or if pain is causing a lack of sleep and then work to treat whichever came first,” Ms. Cralle says.

The good news is that reduction in sleep disturbance is usually followed by improvement in pain symptoms. Ms. Cralle says that when rheumatologists refer their patients with insomnia to a sleep specialist, they can help them break the cycle of chronic pain and insomnia.

“As chronic pain develops, it’s not unusual for patients to develop bad sleep habits without even realizing it,” Ms. Cralle says. “These can include staying in bed most of the day, and even taking naps throughout the day.”

Ms. Cralle says a sleep specialist can help patients beat insomnia by:

Inquiring about their sleeping conditions: “Firmer mattresses are not always the best option for patients with chronic pain,” Ms. Cralle says. “A softer mattress or pillow top can still be supportive, yet provide softness for greater comfort for painful joints. Adjustable air beds (adjustable bases and adjustable comfort levels) can also help ease pain, help with getting in and out of bed and allow for different sleep positions for fluctuating pain levels.”

Reviewing common medications that can disturb sleep: “For those with chronic pain and sleep problems, it’s important to ascertain that their analgesic doesn’t contain caffeine (e.g., Excedrin),” Ms. Cralle says. “In addition, many medications used to treat arthritis (e.g., prednisone) may actively disrupt sleep and should be taken in the morning rather than at night.”

Determining the Causes of Insomnia“Any patient who complains of both pain and insomnia should have a thorough evaluation by a sleep expert,” Ms. Cralle says. “Don’t just assume the sleep problem is caused by their arthritis or autoimmune disease. There may be an unrelated disorder that is the primary culprit in the sleep disturbance, such as sleep apnea, restless legs syndrome (RLS), depression or anxiety.”

Ms. Cralle adds that RA patients have a higher incidence of RLS than the non-RA population.

“Treatment of RLS may not seem obvious if one is focused exclusively on the pain,” Ms. Cralle says. “For example, checking ferritin levels or the use of dopamine agonists may not be a standard treatment for RA, but could lead to sleep improvement.”

Sleep apnea also disproportionately affects many patients with chronic pain. In fact, Ms. Cralle says a particular variant of sleep apnea called upper airway resistance syndrome is very common in women with fibromyalgia, and the incidence of RLS has been found to affect 46–80% of patients with fibromyalgia. Diagnosing and treating the sleep disorder has been shown to improve both fatigue and pain in fibromyalgia patients.

To obtain a diagnosis of sleep apnea, Ms. Cralle says patients are given a test called a polysomnogram. Once traditionally offered only in sleep labs, there are now devices that allow patients to test for sleep apnea in the comfort of their own homes.

If a patient is diagnosed with sleep apnea, they are often prescribed continuous positive airway pressure (CPAP) therapy. CPAP patients sleep wearing a small mask that covers the nose and/or mouth and is connected to a shoebox-size machine by a flexible tube. Gentle

TREATING INSOMNIA IN RHEUMATOLOGY PATIENTS - Continued from page 1

3

air pressure continuously flows through the tube, holding the airway open and allowing patients to breathe normally.

Although CPAP is a highly effective treatment, some patients have problems adjusting to sleeping with the CPAP mask.

“Cognitive-behavior treatments have been found to be the most effective way to improve CPAP use and reduce CPAP discontinuation,” Dr. Gentry says.

Nonpharmacologic Treatments for InsomniaIf a sleep study shows that a patient doesn’t have sleep apnea, there is still a lot that can be done to address their insomnia, says Dr. Gentry, who receives many physician referrals for patients suffering from long-term insomnia.

At her offices in Reno, Dr. Gentry uses cognitive-behavior therapy for insomnia (CBT-I) to treat insomnia, a technique the American Academy of Sleep Medicine and the National Institutes of Health recommend as the standard treatment for insomnia. CBT-I, she notes, is different from regular cognitive-behavior therapy, which doesn’t always work for insomnia. However, CBT-I has proved effective in treating patients with comorbid health problems, chronic pain and depression.

Rheumatologists making referrals to sleep specialists should ensure that specialist has been trained in CBT-I. The American Board of Sleep Medicine has a list of specialists trained in this area, as does the Society for Behavioral Sleep Medicine.

A new study offers compelling evidence of a link between dementia & long-term anticholinergic medications, such as diphenhydramine, & nonprescription sleep aids.

“While sleep medications and antidepressants are commonly used for treatment of insomnia, sleep problems can continue to persist,” Dr. Gentry says. “Typically, it takes three to five sessions with a sleep specialist trained in CBT-I to get to the root causes of a patient’s sleeplessness to effectively treat their insomnia.”

Dr. Gentry begins by assessing each patient’s sleep difficulties to decide on the best course of action. By the time they are referred to her practice, most patients, she says, have tried such techniques as sleeping medications and sleep hygiene practices with limited success.

In her practice, Dr. Gentry teaches patients CBT-I techniques that include recognizing and changing behaviors that affect their ability to sleep.

“This could include learning how to control or eliminate negative thoughts and worries that fuel insomnia,” Dr. Gentry says. “CBT-I also teaches patients to develop good sleep habits and avoid behaviors that prevent them from getting a good night’s sleep.”

She notes that the Veterans Administration (VA) Health System has launched an effort to use CBT-I with veterans that has proved effective in treating those with post-traumatic stress syndrome and insomnia.

Ms. Cralle cites a study published in Sleep, February 2015, that found treating veterans who suffer from chronic insomnia with CBT-I therapy also helped with depression.4

Dr. Gentry says the only downside of CBT-I is that it can be hard to find a psychologist outside of a large city with CBT-I experience. She says that some sleep specialists are looking into whether telehealth technology might be able to fill the void and provide remote CBT-I therapy to those

with insomnia and chronic pain who live in a remote or rural area.

Last year, the VA also released CBT-I Coach, an iPhone app that users can customize with alerts that signal when it’s time to get ready for bed, when to go to sleep and when to wake up. Although it’s not a substitute for CBT-I therapy, it can be used to complement counseling sessions.

Dr. Gentry says CBT-I techniques go beyond traditional sleep hygiene tips, such as not drinking caffeine before bed and creating a bedtime routine, and include:

Keeping a sleep diary for two weeks and recording when they go to sleep, when they wake up and how long they were awake during the night—This information can reveal clues to why the patient is having problems sleeping; Learning stimulus control—“The goal of stimulus therapy is to break the negative association many patients have about sleep and to help them build a healthy association between bed and sleep,” Dr. Gentry says. “For example, patients may be encouraged to get out of bed if they aren’t sleepy and to not use their bed for activities like watching TV”; and Sleep restriction therapy—Using this technique, patients are encouraged to reduce their time spent in bed. Because many chronic pain patients spend a large amount of time in bed, time spent in bed is reduced, leading to increased sleep deprivation. Ultimately, patients begin spending a higher proportion of their time in bed actually asleep.

“Sleep restriction therapy improves the homeostatic sleep drive and moves bedtime closer to the normal circadian sleep phase,” Ms. Cralle says. “This increases deep (N3) sleep and decreases the number and duration of awakenings. Once sleep improves, the amount of sleep time can be slowly increased, adding about one and a half to two hours of good-quality sleep.”

Relaxation training is another CBT-I technique. “A lot of people tell me they have a problem quieting their mind at night, and relaxation training, which uses mindfulness meditation and guided imagery, can help with this,” Dr. Gentry says. In fact, mindfulness meditation, a practice that calms the mind and teaches patients how to focus on the present, has been found to be effective in reducing insomnia and improving sleep quality.5

“CBT-I has been shown to provide long-lasting results that exceed those of sleeping pills,” Dr. Gentry says. “And it’s a much safer alternative that also addresses the root cause of a patient’s sleeping problems.”

Linda Childers is a health writer located in the San Francisco Bay Area of Northern California.

`References

Gray SL, Anderson ML, Dublin S, et al. Cumulative use of strong anticholinergics and incident dementia: A prospective cohort study. JAMA Intern Med. 2015 Mar 1;175(3):401–407.

Billioti de Gage S, Moride Y, Ducruet T, et al. Benzodiazepine use and risk of Alzheimer’s disease: Case control study. BMJ. 2014 Sep 9;349:g5205.

Kolla BP, Lovely JK, Mansukhani MP, et al. Zolpidem is independently associated with increased risk of patient falls. J Hosp Med. 2013 Jan;8(1):1–6.

Trockel M, Karlin BE, Taylor CB, et al. Cognitive behavioral therapy for insomnia with veterans: Evaluation of effectiveness and correlates of treatment outcomes. Behav Res Ther. 2014 Feb;53:41–46.

Black DS, O’Reilly GA, Olmstead R, et al. Mindfulness meditation and improvement in sleep quality and daytime impairment in older adults with sleep disturbances: A randomized clinical trial. JAMA Intern Med. 2015 Feb 16. doi: 10.1001/jamainternmed.2014.8081. [Epub ahead of print]

4

1-800-800-5776erieinfo@lupuspa.org COUNTIES SERVEDCrawford • Elk • Erie • Forest • McKean • MercerPotter • Venango • Warren

1-800-800-5776hbginfo@lupuspa.org

COUNTIES SERVEDAdams • Berks • Columbia • CumberlandDauphin • Franklin • Fulton • HuntingdonJuniata • Lancaster • Lebanon • Mifflin • MontourNorthumberland • Perry • Snyder • Union • York

Landmarks Building, 100 West Station Square Drive Pittsburgh, PA 15219412-261-5886 or 1-800-800-5776info@lupuspa.org

COUNTIES SERVEDAllegheny • Armstrong • Beaver • Bedford • BlairButler • Cambria • Cameron • Centre • ClarionClearfield • Clinton • Fayette • Greene • IndianaJefferson • Lawrence • Somerset • WashingtonWestmoreland

1-800-800-5776neinfo@lupuspa.org

COUNTIES SERVEDBradford • Carbon • Lackawanna • LehighLuzerne • Lycoming • Monroe • NorthhamptonPike • Schuylkill • Sullivan • Susquehanna • TiogaWayne • Wyoming

Erie Branch

Harrisburg Branch

Pittsburgh Branch

Pocono/NE Branch

MIND OVER MOODChange How You Feel by Changing the Way You ThinkSECOND EDITIONBy Dennis Greenberger, PhD / Christine A. Padesky, PhD

Discover simple yet powerful steps you can take to overcome emotional distress - and feel happier, calmer, and more confident. This life-changing book has already helped more than 1,000,000 readers use cognitive-behavioral therapy-one of today’s most effective forms of psychotherapy-to conquer depression, anxiety, panic attacks, anger, guilt, shame, low self-esteem, eating disorders, substance abuse, and relationship problems. Revised and expanded to reflect significant scientific developments of the past 20 years, the second edition contains numerous new features: expanded content on anxiety; chapters on setting personal goals and maintaining progress; happiness rating scales; gratitude journals; innovative exercises focused on mindfulness, acceptance, and forgiveness; new worksheets; and much more.

The Guilford PressISBN 978-1-4625-2042-8$26.95

BOOK CORNER

LUPUS RESEARCH INSTITUTE 5

continued on next page

August 4, 2015

LEAP Aims to Reduce Healthcare Disparities in Underserved PopulationsThe Lupus Research Institute (LRI) is proud to launch the Lupus Education Advancement Project (LEAP) to reduce healthcare and racial disparities among minority and rural populations through education, increased awareness, and improved communication among healthcare providers, patients and the general public. LEAP is funded by a grant of $500,000 from the U.S. Department of Health and Human Services Office of Minority Health.

LEAP expands on the successful Teaching Fellows in Lupus Project piloted in 2014/2015 as a part of The Lupus Initiative®, a national program to reduce health disparities in patients with lupus by educating healthcare providers and medical students. Based on demonstrated success, LEAP continues to employ rheumatology fellows – specialists in training – to educate ‘frontline providers’ in primary and emergency care to recognize lupus and refer to a rheumatologist at the earliest stages of the disease. The new project goes a step further to overcome specific barriers to patient referrals within different types of healthcare networks. LEAP includes education in pediatric lupus, raises public awareness about lupus signs and symptoms, and leverages social media to foster better communication between patients and healthcare providers.

Addressing the ProblemsLupus can be easily overlooked or mistaken for other conditions and up until now, lupus knowledge among frontline providers was not well understood. By using data collected from over 620 participants in the Teaching Fellows in Lupus Project, LEAP will optimize the educational content delivered to the frontline providers to address specific knowledge gaps about lupus in the healthcare community. This will allow the project to better equip frontline providers with the knowledge they need most to accurately consider lupus.

Furthermore, while more and more people are turning to the internet and social media sites for lupus information and advice, it’s difficult to determine reliable sources. This is especially challenging in the Spanish speaking community, for which there is a lack of comparable lupus resources available. LEAP will leverage social media to disseminate answers to common lupus questions from experts, and create new, culturally driven resources in Spanish.

LEAP Takes Innovation to Next LevelIn addition to educating healthcare providers to recognize the signs and symptoms of lupus, local rheumatologists participating in LEAP will also create clear guidelines and channels to help community and other providers in their network refer patients for lupus assessment and diagnosis quickly and efficiently, and incorporate measureable outcomes to assess impact within those healthcare systems.

“One of the things we learned in the Fellows Project was that in some cases, providers in our community didn’t know that a local rheumatologist was available or what specific health information should be collected when considering a diagnosis of lupus. By focusing on educating providers within healthcare networks, we can begin to close some of the common system gaps that create additional barriers to early diagnosis,” said project lead Dr. Amanda M. Sammut, Chief of Rheumatology, Harlem Hospital Center.

LEAP will also leverage Facebook to improve communication between healthcare providers and patients. The addition of this program element is based on data showing that lupus is one of the most highly represented diseases on Facebook, and the success of several Facebook chats in engaging the online patient community.

The new program will be implemented at: Geisinger Health System, PA by Dr. Alfred Denio Montefiore Medical Center, NY by Dr. Irene Blanco Harlem Hospital Center, NY by Dr. Amanda Sammut University of California, Irvine, CA by Dr. Sheetal Desai

Public awareness and education activities will be led by the Hispanic Communications Network and local lupus agencies Lupus LA and the Lupus Foundation of Pennsylvania as well as the Lupus Research Institute.

“LEAP helps fulfill the original vision of the Lupus Initiative, to provide healthcare professionals nationwide with the tools to recognize, diagnose and treat lupus,” notes LRI President and CEO Margaret Dowd. “We look forward to this broader impact that can overcome challenges within individual healthcare systems so patients are diagnosed as early as possible. We are excited to support innovation in patient/provider communications to improve disease management.”

LRI Expands Education Program to Accelerate Lupus Diagnosis and Treatment

6

September 21, 2015Source: HealthDay News

As reported by HealthDay News, a new study published in Arthritis Care & Research finds that the antimalarial drug chloroquine may protect young women with lupus against metabolic syndrome. The National Heart, Lung and Blood Institute defines metabolic syndrome as “the name for a group of risk factors that raises your risk for heart disease and other health problems, such as diabetes and stroke.”

Led by Luciana F. Muniz, MD, from Faculdade de Medicina da Universidade de Sao Paulo in Brazil, researchers evaluated the frequency of metabolic syndrome and disease- or therapy-related factors in 103 premenopausal SLE patients (<40 years) and 35 healthy, premenopausal women of similar age.

Metabolic syndrome was significantly more common among those with lupus versus healthy volunteers. Chloroquine was less frequently used in lupus patients with metabolic syndrome, leading researchers to conclude that chloroquine has a protective effect on the prevalence of metabolic syndrome in these patients.

July 9, 2015

Groundbreaking research from one of the Lupus Research Institute’s (LRI) Distinguished Innovator Award winners shows that artificially exhausting certain immune cells so they are too tired to fight could help lessen disease progression and damage from the autoimmune attack.

Dr. Kenneth Smith, Cambridge University, was awarded one of the first LRI Distinguished Innovator Awards in 2013 to investigate whether gene activity patterns in specific immune cells – CD8 T cells – could predict long-term lupus prognosis and allow for safer and more effective personalized treatment. Dr. Smith and the Cambridge research team have rapidly delivered the outstanding results just published in the prestigious professional journal Nature.

Novel Discovery Brings Personalized Lupus Treatment Much CloserDr. Smith and co-investigator Dr. Eoin McKinney uncovered that the more tired the CD8 T cells become, the less energy they have to attack the body. The exhausted T cell immune response, known to increase poor outcomes in certain viral infections, is now shown to produce just the opposite effect in inflammatory autoimmune disease, namely less severe disease progression with fewer relapses.

Building on this breakthrough, Drs. Smith and McKinney will now pursue ways to predict the course of the disease and to direct treatment choices accordingly. The goal is to minimize medication side effects, lessen organ damage and slow down lupus progression.

“We believe the clinical implications of this study could be profound. A test based on the concept is soon to enter the clinic, and we are exploring new treatments for autoimmunity based on manipulating T cell exhaustion," said Dr. Kenneth Smith.

“The Lupus Research Institute is very proud to have provided Dr. Smith with the opportunity to conduct this truly innovative work that is moving quickly toward a practical clinical test that opens new approaches for personalized medicine and novel, targeted therapies,” LRI President and CEO Margaret Dowd commented.

“This major breakthrough advances LRI’s 2020 goal to suppress disease activity and prevent progressive organ damage while pursuing prevention and a cure," Dowd continued. "We are gratified that LRI’s novel research strategy is once again confirmed, demonstrating the power of scientific innovation to drive discovery and deliver solid results in this complex autoimmune disease.”

Dr. Smith will present the findings to hundreds of top lupus experts at our 2015 Forum for Discovery in October. The theme of this year’s Scientific Conference will be “Precision Medicine”.

Metabolic Syndrome Prevalent in Women With Lupus

LRI–funded Scientist Finds New Paths to Limit Lupus Progression and Damage

7

LUPUS and the SUN….ALL YEAR AROUND

8

August-September 2015

When it comes to managing financial affairs, hoping for the best while planning for the worst can pay big dividends for future security and peace of mind.By Trudie Mitschang

ACCORDING TO RECENT statistics,1 133 million Americans (or 45 percent of the population) have at least one chronic disease. By 2025, it is es-timated that chronic diseases will affect an estimated 164 million Americans — nearly half the population. And as anyone living with a chronic illness can attest, the cost of care can be astronomical, yet many patients have minimal under- standing when it comes to proper estate and financial planning.

Martin Shenkman, a New Jersey CPA and attorney who lectureswith a chronic illness. “You must address the issues at hand and then tailor them to the current situation you are in,” he explains. “You also must have a plan prepared to deal with the many legal and financial situations your fam-ily members will likely deal with in the event of your death.”

His website, laweasy.com, offers the following additional tips:2

• Designate a power of attorney, but be very cautious about who this person is.• If your life timeline has been shortened tremendously, re-evaluate your

portfolio and investment strategy.• Consider setting up a living trust.

Begin with a BudgetMany financial considerations impact short-term and long-term quality of life. Obviously, everyone’s situation is unique, but there are general recom-mended financial guidelines that can help to build financial security, and it all begins with establishing a realistic budget. A budget is a useful financial tool for anyone, but it’s especially valuable for those with a chronic illness be-cause it serves as a foundation for all other financial decisions. Both income and expenses may change if an individual is unable to work or if medical costs rise, and it’s highly likely there will be unexpected medical costs related to the chronic condition.

Prior to crunching numbers, the first task, although unpleasant, involves learning as much as possible about the likely progression and symptoms of the illness so that informed decisions can be made. For example, home healthcare might be required at some point. If a wheelchair will be needed, money may be required to widen doorways or to make additional home modifications. Retirement may come earlier than planned, or a spouse may need to leave work to be the caregiver. Knowing this information, a financial adviser can adjust an individual’s investment portfolio and budget to prepare for projected costs. And an estate planning lawyer can revise the power of attorney and healthcare directives to address specific potential disabilities related to illness.

Cyndi Hutchins, director of financial gerontology at Bank of America Mer-rill Lynch, suggests setting up separate reserves to pay for future healthcare expenses such as shifting assets toward income investments like bonds. Another possibility is setting up a deferred annuity that could kick in down

the road when living expenses related to illness are expected to rise. “These types of investments allow you to turn on the income stream when you need it,” she says.3

Keeping good records is also important. For example, it is a good idea to set up a system to help track medical expenses and insurance claims. And, a list of instructions that includes where to find important household and financial information can be prepared for a trusted friend or relative who can access it in an emergency.

Another step to consider is streamlining finances by consolidating various accounts. Having everything in one place can make it easier and quicker for an individual or a trusted advisor to manage. One time-saving step is to set up automatic bill payment or online banking. This will not only save time each month, it will also help to track expenses and see where all the money goes.

The Art of Cutting CostsMany chronic illnesses require expensive medicines. Financial experts advise those on Medicare to review the Part D prescription drug or Advantage plan after diagnosis to see if it would be advantageous to make adjustments to health plans. If Medicare isn’t an option, an insurance broker can help find a plan that covers much of the drug costs. When it comes to healthcare exchanges, individuals should be sure to do their homework. A study by HealthPocket.com4 found that average out-of-pocket

costs for patients taking one of five common specialty drugs were lowest for platinum plans, even though those plans charge higher premiums than gold, silver and bronze plans.

Some foundations, states and drug companies offer programs that pay for out-of-pocket costs insurance doesn’t cover. If an individual qualifies, he or she can get discounts, help with co-payments or several months of free prescriptions. Some programs require proof of financial need, while others don’t. “It all depends on the drug, the company and the condition,” says Tricia Blazier, personal financial planning manager at Allsup, a firm that helps people get disability and healthcare benefits.3 Links to programs can be found at the Partnership for Prescription Assistance (www.pparx.org) and at RxAssist (www.rxassist.org). Specific disease organizations may also offer financial help.

Financial Planningfor Patients with Chronic Illness

9

The Ins and Outs of InsuranceUnderstanding insurance coverage and making sure the right kind is purchased is essential. A study by Prudential Insurance titled “The 5 Ws of Chronic Illness Care”5 explores important steps individuals can take to mitigate the financial impact of a chronic illness, with an emphasis on having the correct insurance products and coverage in place. According to the study, some considerations to keep in mind include:• Cost: How much will the product cost? Is it a one-time payment or are pay-ments ongoing? Are the costs fixed or can they increase? If the cost is afford-able now, will it still be in retirement, when income is more likely to be fixed?

• Access: How easily and quickly can funds be accessed?• Payment flexibility: Does the product provide payments in the form of re-

imbursements for only qualified medical expenses, or does it provide funds that can be used for any expenses once the requirements have been met?

• Duration and continuity: How long will insurance coverage last — for a life-time or for a set time period? Is there a limit to how long an individual can use it once payments begin? How long will the payments last once they have begun? Can payments be started and stopped while coverage is maintained?

• Amount: Is the coverage based on a set amount or time period? What hap-pens if the amount isn’t enough for an illness?

• Prioritizing and adding layers of protection: Just as there is no one product that perfectly addresses all the issues of chronic illness care costs, there probably isn’t one product on the market that is perfect for each person. Therefore, a product should be chosen based on priorities, and more than one layer of coverage may help address all priorities, although this approach can be more costly.

Types of insurance to consider depend on specific circumstances, but most financial planners agree that if an individual owns term life insurance, he or she may want to consider convert- ing it to permanent life insurance to provide protection for loved ones. And, depending on what type of perma-nent life insurance it is, benefits may be accessed today for expenses down the line. For example, New York Life recently intro- duced a chronic care rider that is available on whole life and custom whole life policies purchased after Jan. 10, 2014. The rider provides an opportunity for the policy owner to receive a portion of the policy’s face amount should the insured become chronically ill.

For those who already own a life insurance policy that accumulates cash value, it can be borrowed against. If the policy has an accelerated benefits rider, a cer-tain percentage of the death benefit can be unlocked to use while the insured is still living. Individuals who are caring for a loved one with a chronic illness will want to make sure their own life insurance is in place and sufficient to support the person they are caring for, in case they pass away unexpectedly.

There is also the catch-22 of affording life insurance with a pre-existing condition. According to Bankrate.com, while it has historically been true that it is next to impossible for those with pre-existing conditions to find afford-able insurance products, the insurance landscape has shifted dramatically in recent years, making it easier, though not inexpensive.6 “Better detection, earlier diagnosis and more effective treatment of illness mean today’s patients live longer, healthier lives,” notes Dr. Valerie R. Kaufman, vice president and chief medical director at MassMutual. “Insurance companies are offering [life] insurance to those with chronic medical conditions because there is much more medical information available.”

While the outlook is more optimistic now, there are, of course, no guaran-tees, and the ability to purchase a plan will be determined by many factors, including:• Specific type of illness• Severity of the illness• Time elapsed since diagnosis• Stability of the applicant’s health• Treatment regimen

Disability insurance is another key component of the financialplan. A typical group plan offered by an employer will replace up to 60 percent of an individual’s salary, but a supplemental plan or an individual policy will cover up to 80 percent. An insurance advisor can perform a risk-management audit to determine how much coverage is needed.It’s a good idea to consult with an impaired-risk specialist 34 IG Living | August-September 2015 | IGLiving.com

when shopping for insurance. This insurance agent knows which life insur-ance companies offer the most competitive prices for applicants with pre-existing health conditions. Having an advocate who can do the legwork can be well worth the time and effort.

The Essentials of Estate PlanningEstate planning is possibly one of the most important components of a solid financial plan. Not only is it important to “get your affairs in order” in the event of death, but there are many estate planning tools to help manage finances while living.

For example, a durable power of attorney can help protect property in the event an individual becomes unable to handle financial matters. It also allows that person to authorize someone else to act on his or her behalf to do things like pay everyday expenses, collect benefits, watch over investments and file taxes.

A living trust (also known as a revocable trust) is a separate legal entity that protects property and investments. It’s called a living trust because it’s meant to function while a person is alive. Thus, the trust is controlled by the person who creates it, who can change the trust terms, transfer property in and out of the trust or end the trust altogether. That individual can also name a co-trustee such as a financial institution or a loved one to manage the assets in case he or she is unable to do so.

An advanced medical directive lets others know what medical treatment is desired, and it establishes who will make medical deci- sions for that indi-vidual in the event he or she can’t express pref- erences. Depending on what’s allowed by the state in which the person lives, this document may include a living will, a durable power of attorney for healthcare, and a do-not-resusci-tate order.

Getting Affairs in OrderIt’s a well-known adage that if you fail to plan you plan to fail. Taking the time to get financial affairs in order now can ease anxiety about the un-known, and help create financial security no matter what the future may hold.

TRUDIE MITSCHANG is a contributing writer for IG Living magazine.

References1. The Partnership to Fight Chronic Disease. The Growing Crisis of Chronic Disease in the United States. Accessed at www.fightchronicdisease.org/sites/fightchronicdisease.org/files/docs/GrowingCrisisofChronicDiseaseintheUSfact sheet_81009.pdf.

2. Shenkman, MM. Planning for Chronic Illness. Accessed at www.laweasy.com/t/20080723201900/planning-for- chronic-illness.

3. Create a Checklist to Help You Cope with Chronic Illness. Premium Health News Service, March 25, 2015. Accessed at www.tribunecontentagency.com/article/create-a-checklist-to-help-you-cope-with-chronic-illness.

4. Despite High Premiums, 2015 Platinum Plans Are Best Buy for Consumers Using Ex-pensive Specialty Drugs. Health Pocket, Aug. 26, 2014. Accessed at www.healthpocket.com/healthcare-research/infostat/2015-obamacare-specialty- drug-costs#.VXHRS-89VhBc.

5. Prudential. The Five Ws of Chronic Illness Care. Accessed at pruxpress.prudential.com/documents/pruxpress/ 0257304_The_5_Ws_of_Chronic_Illness_Care_Whitepa-per_FINALCopy.pdf.

6. New York Life. Essential Planning Tips for Chronic Illnesses. Accessed at www.newy-orklife.com/learn-and-plan/ five-essential-planning-tips-for-chronic-illnesses.

10

LUPUS NEWS AROUND PA

2015 EVENT REPORTS6th Annual Ronin Awareness Ride and Cookout

This benefit motorcycle ride and cookout held in loving memory of Barbara Bellamy was held on June 13th at Universal Park in Penn Hills, PA. An awesome ride,

delicious cookout and fun family activities filled the day! Our thanks to Jarrett Logan and the Ronin members for their continued generosity and work for the Lupus cause. For more information, visit www.roninmc.com.

2015 Smoked Country Jam Bluegrass Festival This 3-day annual family-friendly event was held at Quiet Oaks Campground in Cross Fork, PA from June 18th through the 20th. The event featured a 3-day Lupus Auction, spreading awareness and supporting patients across PA. Thank you, Ron and Teresa Kodish, for your ongoing hard work and dedication in organizing this annual event. Visit www.smokedcountryjam.com event information.

An Intimate Evening with Gino Vannelli and his Band was held on June 20th at Corbriwood Stage in Gibsonia PA. An evening of beautiful music, food, friends and fun was enjoyed by all in attendance. A portion of the proceeds benefitted the foundation. Thank you John Vento for bringing this fabulous event to the Burgh!

3rd Annual Mary Ann Vento Memorial Concert The third “rockin” year of this event took place at the Baja Bar & Grill in the Fox Chapel Yacht Club on Sunday, August 16th. All attending enjoyed the live music by The BUSINESSMEN and The Nied’s Hotel Band and special guest Mia Z in the surrounds of great food, raffles

and auctions. Our thanks to John Vento, the band members and dedicated volunteers for their generosity and support of the Lupus Foundation of PA.

20th Annual Lupus Loop!!! Sponsored by Hefren Tillotson, the 20th anniversary celebration event took place on Saturday, September 19th in Station Square, Pittsburgh. Registrants enjoyed a beautiful day filled with plenty of food, fun, refreshments and snacks as they

joined Kelvin Beachum of the Pittsburgh Steelers to team up and tackle lupus. The ASK THE RHEUMATOLOGIST tent was staffed by Jeremy Tilstra, MD and Kimberly Straub, practice manager, from UPMC Lupus Center of Excellence. Our thanks to Kelvin, Paul Kostyak, Hefren Tillotsn and Sally Wiggin, all volunteers, attendees, supporters and sponsors for their support in our 20th year.

Lopin’ for Lupus - New Location in 2015 The Lopin for Lupus Get-A-Gold Futurity & Horse Show was held on October 3rd at Pure Gold Equestrian Center

in Salem OH. Many beautiful horses and riders from surrounding areas showed at this event. Our thanks to Mary Jane (Janie) Ruffner for her dedication, talent and energy in putting together a fabulous show. The Fall Lupus Education Seminar was held on Saturday, October 3rd and the reviews were impressive. We tried the Grand Concourse Restaurant as a new venue which was well received by the attendees. The title, Lupus can affect…the pulmonary system…the Ability to Stay Active… the Renal System was presented by two physicians and a lupus patient/triathlete. David Theis, DO spoke about lupus’ effects on the pulmonary system, Joella Baker shared her life with lupus as an adult and youth triathlon coach, and Yousef Zarbalian, MD provided information on the renal system and lupus. Their offering of time and talent to this program is much appreciated. The Lupus foundation provides twice yearly programs, in the spring and fall. Please view our web site at www.lupuspa.org for upcoming programs.

Cynthia Donlan – Luzerne County Rep on the Move! We sincerely thank our Lupus PA Luzerne County Representative, Cynthia Donlan, for her determination in her fight against Lupus. Cynthia’s hard work and dedication is the reason for the success of her events each year. These events have generated funds, awareness and education across Luzerne County for many years. The Taming the Wolf auction event is held each May with the Empowerment of the Alpha Wolf Conference and Banquet close behind each July. Look for 2016 dates to be posted. Our thanks, also, to the many event volunteers and contributors for their ongoing support of Cynthia, the foundation and Lupus patients across PA.

11

2016 Event AnnouncementsThe 38th Annual Lupus Luncheon and Fashion Show is scheduled for April 2nd at ELEVEN Contemporary Kitchen in Pittsburgh. Plan to join us for a variety of fashions, auctions and a fabulous lunch!

US Open at Oakmont Country Club June 13-17 Coffee and Beverage tent volunteers needed. All volunteers will have a pass for the day to enjoy the event before or after their shifts. 3 shifts will run each day; 6am – 2pm, 9am – 5pm and 11am – close (approx 6pm). Up to 8 volunteers will be scheduled for each shift. Whether you plan to attend alone, with a friend or with a group of family or co-workers, it is a fun and exciting experience. The lupus foundation will receive a

specified amount (based on the total of all concession sales) per each shift filled. Contact the office at 800-800-5776 for additional details and information.

Thinking (and Fundraising) Outside the Box We acknowledge and thank those involved in the following for the thoughtfulness, hard work and support they have shown through a variety of fundraising and awareness opportunities.

Altra Industrial Motion, Inc – Jean DayAnsys, Inc - Employee Event and Company MatchB Braun Medical, Inc – Support World Lupus Day Tucker Arensberg – Jean Day

Additional ideas can be found on www.lupuspa.org. Please let us know if you have an idea or know of a particular available venue. We will be happy to assist and provide information.

26th Annual Lupus Challenge Golf Tournament The 26th Annual Lupus Golf Challenge was held on July 13th at The Club at Nevillewood. Lunch, golf, cocktails and dinner were enjoyed by all. Our thanks to Co-Chairmen Tom Miller and Jay

Caufield as they continue to generously support the foundation each year. We also thank the Pittsburgh Steelers and Regency Transportation for ongoing sponsorship of this tournament.

WAYS TO SUPPORT THE LUPUS FOUNDATION OF PENNSYLVANIA

As our 40th anniversary year comes to an end, we thank everyone who has supported or contributed in any way to the efforts of the Foundation making is possible to continue in our mission over the past 40 years and beyond. Listed below are additional ways in which you may

be able to help support the foundation into and throughout the New Year.

• Visit www.lupuspa.org or call the office to make a Gift that Gives Holiday Donation. You may also choose to have a personalized card sent honoring someone special!

• Donate through United Way / Workplace Giving Programs

• Matching Gifts: Did you know that $6-$10 billion in company matching gifts goes unclaimed each year? When making a donation to the LFP please be sure to reach out to your company about their matching gift program.

• Become a member - visit www.lupuspa.org for more information and levels

• Contact info@lupuspa.org to become an active volunteer in your area

• Use www.goodsearch.com as your search engine. A penny is donated to the LFP for each search.

• Shop online using either Goodshop.com, Smile.Amazon.com, or Igive.com, and a percentage is donated back to the LFP when choosing Lupus Pennsylvania as your charity of choice.

• Vehicles for Charity - https://www.vehiclesforcharity.org/Donate/LFP.html

• Join the Bravelets craze https://www.bravelets.com/bravepage/fighting-against-lupus

• Attend any of our upcoming fundraising and awareness events.

ENERGIZE LUPUS• Sign up to use Stream Energy as your service supplier

and LupusPA will benefit each time you pay your bill without any additional cost to you. (See next page for additional info) Sign-up link can be found at www.lupuspa.org.

12

October 10, 2015 • By Reuters Staff

(Reuters)—Pop singer and actress Selena Gomez has revealed in an inter-view that she was diagnosed with the autoimmune disease lupus, which led to her canceling the end of her tour in 2013, but that the disease is now in remission.

“I was diagnosed with lupus, and I’ve been through chemotherapy,” Gomez, 23, told Billboard magazine. “That’s what my break was really about. I could’ve had a stroke,” she said.

Gomez canceled concerts in Russia and Australia saying at the time that she needed “to spend some time on myself.”

The move, followed by a stint at an Arizona rehabilitation facility, generated tabloid rumors of struggles with pills, alcohol, or even difficulties over her breakup with pop star Justin Bieber, which Gomez told Billboard angered her.

“I wanted so badly to say, ‘You guys have no idea. I’m in chemotherapy,” she told the magazine in its new issue which was out on Thursday.

“But I was angry I even felt the need to say that. It’s awful walking into a restaurant and having the whole room look at you, knowing what they’re saying. I locked myself away until I was confident and comfortable again.”

Gomez gained fame as a Disney Channel actress in her teens on “The Wizards of Waverly Place,” before launching a music career with hits such as “Love You Like A Love Song.”

“It’s so disappointing that I’ve become a tabloid story. It took away every-thing I loved about this business,” she added.

Gomez, whose new album “Revival” debuts on Friday, said she is staying healthy now through “diet, routine and medication,” as well as by surround-ing herself with supportive friends.

Some 1.5 million Americans suffer from lupus, according to the Lupus Foundation of America. The disease mainly strikes females between the ages of 15 and 44 years old.

SELENA GOMEZ SAYS SUFFERED FROM LUPUS, UNDERWENT CHEMOTHERAPY

And Energize LupusPA!How do you get the most out of your energy bill?? When you are saving money AND contributing to a worthy cause!!!!

We’ve partnered with Stream Energy, a retailer who pays our organization a residual income for every energy customer we enroll on Stream Energy service. They offer competitive rates with possible savings up to twenty percent. Pennsylvania energy customers in the Duquesne Light, West Penn Power, MedEd, PECO, Penelec and PPL are able to make the switch. Energy customers in the states of Georgia, Maryland, New Jersey, New York, Texas and the Washington DC area are also eligible to make the switch and benefit LupusPA. Pass the word along to friends and relatives and "Help us Fight the Battle!” Enrolling is easy – visit our webpage (www.lupuspa.org), sign up for service, save on your bill and help us generate charitable funds. There is no easier way to give without any additional steps or cost on your part. It’s in your power to help.

Can we count on you???

Beautiful & Memorable Moments in Time by Jess Hager For more than twelve years Jess Hager donated his original paintings of Pittsburgh winter scenes to be used as a holiday greeting card to benefit the Foundation. In January of 2007, Mr. Hager passed away after suffering a heart attack.

Jess had made provisions for the Lupus Foundation to continue us-ing his artwork. Due to his heartfelt wishes and the generosity of his wife, Jan, we are able to continue fundraising in Mr. Hager's memory. Our hope, as it was his, is that you will find pleasure and warm memories in the beautiful Pittsburgh scenes of which he was so fond. For ordering information, please visit www.lupuspa.org or call 800-800-5776.

13

June 24, 2015 | By Health EditorBy Amy NortonHealthDay Reporter

MONDAY, June 22, 2015 (HealthDay News) — Not long ago, women with lupus were often told pregnancy was too risky. But new research confirms that when the disease is under control, women usually have healthy pregnancies and babies. The study, of 385 pregnant women with lupus, found that 81 percent gave birth to a full-term, normal-weight baby.

It’s not always an easy road, though, the researchers found. And some women — including those with high blood pressure and symptom flare-ups during pregnancy — had higher risks of complications, including pregnancy loss and preterm delivery.

Black and Hispanic women also faced greater risks than white women, for reasons that are not fully clear, experts added.

The study, published in the June 23 online edition of Annals of Internal Medicine, reinforces what many doctors are already telling women with lupus: If you plan for pregnancy and get your symptoms under the best control possible, your chances of a healthy pregnancy are high.

Still, that confirmation was needed, said Dr. Bevra Hahn, who wrote an editorial published with the study.

“The teaching that disease activity is an important harbinger of poor [pregnancy] outcomes was not universally accepted before this study, because of the limitations of prior [research],” said Hahn, a rheuma-tologist at the University of California, Los Angeles, Medical Center.

“This study puts the matter to rest,” she said.

Lead researcher Dr. Jill Buyon agreed. “We’ve come to a time where we’re telling women with lupus, ‘Yes, you can become pregnant,'” she said. “This study provides reassurance that we’ve been doing the right thing.”

But just as important, Buyon added, the findings give a clearer picture of which women are at greater risk of pregnancy complications.

According to Buyon, that doesn’t mean a woman with a risk factor should not become pregnant — but that she and her doctor should be prepared.

“We’ll be able to use this information for counseling patients,” said Buyon, who directs the rheumatology division at NYU Langone Medi-cal Center, in New York City.

In lupus, the immune system attacks the body’s own tissue, and the onslaught can have widespread effects — damaging the skin, joints, heart, lungs, kidneys and brain. The disease mostly strikes women, usually starting in their 20s or 30s.

Treatment includes immune-suppressing drugs and other medica-tions to control symptoms, which range from fevers and joint pain, to extreme fatigue, to depression and memory problems. Even with treat-ment, though, people with lupus often have symptom flare-ups.

“Twenty years ago, if a woman with lupus asked her doctor if it was safe to become pregnant, the doctor would probably say it’s too dan-gerous,” Buyon said.

The concern was both that pregnancy would exacerbate a woman’s symptoms and that her baby would be at risk. In recent years, though, doctors have learned that with the right care, women often have a healthy pregnancy.

The new study, done at eight U.S. and one Canadian medical center, is the largest one yet to follow pregnancy outcomes for women with lupus.

Overall, 19 percent of the women had an “adverse outcome,” such as stillbirth, preterm delivery or an underweight baby. But the risk varied depending on several factors.

The strongest risk factors were using blood pressure drugs or having antibodies called lupus anticoagulants, which can cause blood clots. Those women were seven to eight times more likely to have a preg-nancy complication, versus other women.

In addition, while most women did not have lupus flare-ups during pregnancy, those who did faced a higher complication risk.

When it came to race, black and Hispanic women had higher risks: 27 percent and 21 percent, respectively, had some type of pregnancy complication.

Buyon said the reasons for the racial difference are unclear, but access to health care probably does not explain it, since all study patients were receiving care.

Hahn said she suspects genetic influences play a role — though envi-ronment, like diet or exposure to pollution, could also be at work.

As for the other risk factors, Buyon said more research is needed. She did stress, though, that in the case of high blood pressure drugs, it’s the underlying condition that threatens a healthy pregnancy.

“It’s not the drugs,” Buyon said. “We don’t want women to think, ‘Oh, I’ll just stop taking my medication.'”

She and Hahn both advised women with lupus work with their doctor in advance of becoming pregnant, to make sure their disease is under control. Certain lupus medications also have to be stopped before pregnancy.

Once a woman becomes pregnant, Buyon said, both her rheumatolo-gist and a maternal-fetal medicine specialist — or obstetrician who specializes in “high-risk” pregnancy — should be involved.

“Be sure your doctor knows how your lupus is doing, and that you keep [the disease] as quiet as possible,” Hahn said. “Watch your blood pressure and communicate about it. Be sure your lupus anticoagu-lant has been measured, and discuss the various strategies you might choose with your doctor.”

Anti-clotting medications, such as low-dose aspirin, may be an option for women with lupus anticoagulant.

Pregnancy Results Good for Women Who Have Lupus

14

Lisa Ross, Lehigh County Representative

Lupus is often described as a “hidden” disease. So many of its symptoms have no outward appearance on the body. Joints may ache, but not swell. Internal inflammation makes its presence known in private pain and the ubiquitous lupus fatigue is a familiar but silent companion of so many lupus patients. But even when the disease breaks forth with a rash, a lesion, a wan complexion, the patient him- or herself often hides the disease, pushing onward with activities, trying to minimizing the effects of pain and fatigue, hiding them from others. Lisa Ross, the leader of the Lehigh Valley Lupus Connection Support Group, has first-hand knowledge of this conviction to cope by pushing aside the reality of lupus.

As a hard-working advocate for lupus awareness and patient education and support, Lisa does not seem like someone who chooses to deny or hide lupus in her life. She sets up informational tables at local health fairs; she negotiated with a local health center for space for a lupus support group; she started and maintains a Facebook page for the support group she facilitates; she searches out speakers and contacts. “I think it is very important to educate ourselves,” she says. Her active involvement grew after a simple call to the Pennsylvania Lupus Foundation’s office in Scranton in 2012. “My daughter had gone off to college,” she recalls, “and my son was getting older and I wanted to help others in some way.”

Working together with the Patient Services Director in the Scranton office, they put together the Lehigh Valley program – “New Approaches to Lupus 2012” which drew almost fifty people. In 2013, LFP director Debbie Nigro asked if she would be willing to stop by a local fundraiser in Bethlehem, PA and pick up the donations. Lisa agreed and soon was asked to represent the foundation at a few health fairs in the Lehigh Valley area. “So many of the people I talked to asked about a support group,” she explains. She spoke with foundation Patient Support Director Marian Belotti who encouraged her to put together a

support group education program to test the interest. Lisa agreed to do it. “This was way out of my comfort zone and I had absolutely no experience leading a support group. I said ‘Why not?’ there is definitely a need and organized it.”

The self-confident group leader willing to talk about her lupus with any and everyone was not always so forthright. In the 1990s, Lisa was in her twenties, married and working for the large corporation, Dun and Bradstreet in the Lehigh Valley in Eastern Pennsylvania. She and her husband were expecting their first child when

some blood work came back with some distressing results. The syphilis test routinely given to all pregnant women was positive. Thankfully, lupus awareness has increased such that medical personnel know to double-check for a false-negative result – a common occurrence in pregnant women with lupus. Lisa says, “I had never been sick. We were quite shocked.” More tests revealed that she had a positive ANA test and a positive lupus anticoagulant, but no symptoms of the disease. She remembers, “The doctors assured us, saying that I may never even develop any symptoms, so we were optimistic. We decided not to tell our families, not wanting to get everyone crazy with worry.” She was carefully monitored as a high-risk pregnancy.

Lisa delivered a healthy baby girl and all seemed well. She did have some joint pain and fatigue, but attributed it to the delivery and lack of sleep. About three weeks post-partum, she awakened one morning with pain in her chest and as the day went on it became more difficult to breath. At the hospital, she was evaluated for a suspected blood clot and treated with a blood thinner. Eventually, a diagnosis of pleurisy was made, ruling out a blood clot. “My emotions were all over the place,” she says. “Not having my newborn with me during my hospital stay was extremely difficult.” She was treated with anti-inflammatories and sent home after a week. Though the hospitalization forced Lisa and her husband to share the news about potential lupus with their families, everyone tried to go back to living a normal life. After a four month maternity leave, she was back at work full-time. Lisa says, “I had some issues with the sun – some rashes, joint pain and fatigue – but I’ve never been one to take medications. I took them for a while, but then went off them.”

About four years later, Lisa noticed an odd spot on her scalp. “It was sort of a lesion, and there was no hair growing there,” she describes. She saw a dermatologist who biopsied the lesion. The results were consistent with discoid lupus. She began to notice a general thinning of her hair. “It was a problem for me,” she says.

LIFE WITH LUPUS By Jan Grice

15

“I was still in my twenties and appearance was important to me. I remember thinking, ‘I hope my condition doesn’t get worse.’” In spite of the lupus diagnosis, she and her husband decided to try to have another child. Their family showed concern and advised them against risking Lisa’s health. But Lisa was confident it would be fine. The pregnancy was more difficult. She developed preeclampsia and was induced three weeks early. Afterwards, she had the same post-partum joint pain and was prescribed steroids. “I had to stop nursing,” she recalls. “It was a very stressful time. We had death in the family one week before my son was born and I began to see how stress played a role in managing this disease. I decided not to return to work. It was definitely difficult, we had to cut back, but I loved being home with my children,” she says.

As family life continued, Lisa’s body reacted to the daily stresses of life. In 2003, during a period when the family was moving, the lesions on Lisa’s head became more severe. She began to experience a lot of hair loss which forced her to cover up with a hat. She remembers people looking at her as if she had cancer. “I never really talked about it. I felt that I didn’t have something really terrible, like cancer, and just kept it to myself,” she explains. Her treatment during this time consisted of anti-inflammatories, Plaquenil, topical steroids and even explored other holistic therapies. After about six months, her hair began to grow again.

By 2004, Lisa began to experience painful lesions on her feet and extreme fatigue. Frustrated with her medications, she looked for a better solution. Her dermatologist referred her to one of his colleagues at Penn Medicine in Philadelphia, Dr. Victoria Werth, a leader in clinical research and treatment for cutaneous lupus. Lisa was evaluated by Dr. Werth and began a new treatment with Plaquenil and Thalomid (Thalidomide). “As soon as I took Thalomid,” she remembers, ‘everything turned around almost immediately!’ My lesions healed, my joint pain and fatigue improved dramatically and I was sleeping at night”. For the past twelve years, Lisa has been successfully treated with Thalomid (Thalidomide). The drug is well known for its disastrous effects on developing fetuses when it was used for nausea during pregnancy in the 1950s. Serious birth defects of the arms and legs were the result. Because Lisa is still in her reproductive years, while taking the drug, she is required to take part in the rigid educational and monitoring program, S.T.E.P.S, which is the “System for Thalidomide Prescribing Safety”. The drug does have some side effects, namely, peripheral neuropathy in the hands and feet and a higher risk of blood clots, but Lisa has not experienced any of these. She undergoes a neurological workup to monitor this every year.

Thalidomide is not approved by the FDA for the treatment of lupus, so there are some difficulties in obtaining insurance coverage for the treatment. The drug manufacturer, Celgene, has an excellent patient support program, which has helped Lisa several times over the course of her treatment. As research advances, hopefully more lupus patients will be able to find relief from this treatment.

Lisa’s treatment has been very effective for her skin problems, but she still struggles with fatigue and joint pain, symptoms so familiar to all lupus patients. She describes how she continues to tackle the myriad chores of domestic life. “Even my husband,” she says, “sometimes wonders if there is anything really wrong with me. But I just want to go on with my life. I know I will pay for over-activity, but that is a choice I make.” The very personal experience of a body that doesn’t quite work right is something difficult to share, even with those closest to us. Lisa has spent years keeping her disease to herself and still today says that is her preferred approach. She doesn’t find this inconsistent with her work for the lupus foundation. She explains, “I’m not out there shouting it from the rooftops, but I want to be there for others. The Lehigh Valley Lupus Connection is a support group education program for lupus patients and their families. I want to help people learn more about their disease and how to help themselves in between doctor visits. I’ve seen relationships form among the people who come to the support group and that is a wonderful thing.” For the future, Lisa hopes more local people with lupus will come forward and get involved. “I’m always making new connections,” she says. Lupus patients in eastern Pennsylvania have a real advocate in Lisa Ross, whose work uncovers just a little bit of the hidden pain of lupus.

The Lehigh Valley Lupus Connection support group meets typically on the 4th Saturday of the month at 11:00 AM at the Good Shepherd Health & Technology Center in Allentown. If you would like to register or are interested in sharing your time or talents with the group, please contact Lisa at jlross4@ptd.net or The Lupus Foundation of PA at 800 800-5776 or lupuspa.org.

The Lehigh Valley targeted date for the Highmark Walk for a Healthy Community is Sat. June 4th, 2016. A 5K walk and a 1K fun walk to be held at DeSales University, Center Valley, PA. Online registrations will open Feb. 1st for individual walkers, teams, virtual teams and corporate sponsors. Come out and join the Lehigh Valley Lupus Connection to raise awareness and support the Lupus Foundation of PA.

For more info, contact Lisa Ross at jlross4@ptd.net.

SAVE THE DATE

16

Mon, 10/26/2015

Songtao Shi (Credit: UPenn)

People with lupus, an autoimmune disease, suffer from fatigue, joint pain and swelling and also have a markedly increased risk of developing osteoporosis. Clinical trials have shown that receiving a transplant of mesenchymal stem cells can greatly improve the condition of lupus patients,

yet it has not been clear why this treatment strategy works so well. Now, University of Pennsylvania researchers and colleagues have puzzled out a mechanism by which stem cell transplants may help preserve bone in an animal model of lupus. In a paper published in the journal Cell Metabolism, they show that the transplanted cells provide a source of a key protein called Fas, which improves the function of bone marrow stem cells through a multi-step, epigenetic effect. The work has implications for potential therapeutic strategies for lupus as well as other diseases for which stem cell transplants have shown promise. "When we used stem cells for these diseases and put them into the circulation, we didn't know exactly what they were doing but saw that they were very effective," said Songtao Shi, chair and professor of the Department of Anatomy and Cell Biology in Penn's School of Dental Medicine and a co-corresponding author on the paper. "Now we've seen in a model of lupus that bone-forming mesenchymal stem cell function was rescued by a mechanism that was totally unexpected." Shi collaborated on the work with Shiyu Liu, Dawei Liu, Chider Chen and Ruili Yang of Penn Dental Medicine; Kazunori Hamamura, Ali-reza Moshaverinia and Yao Liu of the University of Southern Califor-nia; and co-corresponding author Yan Jin of China's Fourth Military Medical University. Shi and colleagues had earlier shown that mesenchymal stem cells can be used to treat various autoimmune conditions in animal models. The success was welcome, but the researchers didn't quite understand why the method was so successful. "We found that a one-time injection of stem cells would ameliorate disease for far longer than we would expect," Shi said. They knew that the transplanted cells were not becoming incorpo-rated into the recipient's organs to a significant degree, so what was allowing the effect to last? The researchers began to suspect that an

epigenetic mechanism was at work that could permanently recali-brate how the recipient's genes were being regulated to switch them from a pathogenic to a normal state. To investigate this possibility, the team looked at a mouse model of lupus, which they had earlier shown could be ameliorated with one injection of stem cells. Normally, mice with lupus had bone marrow mesenchymal stem cells which did not differentiate normally and thus had a significantly reduced capacity to produce new bone. An infusion of stem cells reversed this abnormality, even as long as 12 weeks following the transfer. Pursuing the possibility of an epigenetic mechanism, which could regulate how genes were expressed, the researchers then analyzed patterns of DNA methylation acting on the promoters of bone mar-row mesenchymal stem cell genes. They found that the lupus mice had a significant different pattern than normal mice, a difference that was partially reversed by stem cell therapy. Further experiments allowed the researchers to piece together the pathway by which this occurred. They found that genes in the Notch family, genes known to be involved in bone stem cell self-renewal and differentiation, became highly methylated in the promoter region when mice with lupus received stem cell infusions. Eventually they discovered that the lupus mice had a malfunctioning Fas protein that prevented their bone marrow mesenchymal stem cells from releas-ing a microRNA molecule, which in turn blocked methylation of the Notch promoter. As a result, the lupus mice's stem cells differentiated poorly, and they had weaker bones. When a stem cell infusion from a healthy donor was introduced, however, the donated cells secreted microvesicles called exosomes containing normal versions of Fas that could be used and reused by the diseased cells, restoring their ability to self-renew and differenti-ate and promoting bone formation. Indeed, Shi's team demonstrated that Fas alone, delivered by secreted exosomes, could rescue the activity of lupus bone marrow stem cells in culture. "The cells themselves don't produce Fas, but they can use the compo-nents of the donor stem cells to rescue their function," he said. To see if this process is common across different conditions, Shi and colleagues are now exploring the mechanisms by which stem cell therapies reap benefits in other models of disease. "You can imagine if you can reuse Fas you might also be able to reuse other cell components to target other diseases," Shi said. Source: University of Pennsylvania

Study Shows How Stem Cell Therapy Protects Bone in Lupus

17

H e a lt H t o o l s

Lupus Symptom TrackerPrint out this table and use it to make notes to take to your doctor. Put a check mark beside the symptoms you have. Note when you have them.

Symptom 3 Where? When did you first

notice? How often? Recent dates?

Example: rash 3 face and chest 2 years ago Once or twice a month

9/17, 10/8, 10/23, 11/15

Red rash or color change

Painful or swollen joints

Fever with no known cause

Feeling very tired

Trouble thinking, memory problems, confusion

Chest pain with deep breathing

Sensitivity to the sun

Unusual hair loss

Pale or purple fingers or toes

Sores in mouth or nose

Other

Adapted from National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

U.S. Department of Health and Human Services, Office on Women’s Health

http://www.womenshealth.gov

1-800-994-9662

TDD: 1-888-220-5446

Keep a Symptom Diary to be your own Health AdvocateHere is a helpful resource for any lupus patient. Use it to keep track of your symptoms to provide accurate, concise information for your recall and when talking with your doctor. It can also prove to be helpful in dealing with insurance claims or disability issues.

18

C O U N T Y R E P R E S E N T A T I V E SADAMS Kristin Hundley 717-337-9226

ALLEGHENY Branch Office 412-261-5886

BEAVER Sheila Drevna 724-891-2884

BEDFORD Sally Frear 814-623-5820

BERKS Melissa Rogers 610-376-5402

BLAIR Marjorie Snyder 814-944-5911

BUTLER Rose Hinch 724-283-8811

CAMBRIA Cathy Ringler, RN 814-242-9787

CENTRE Melissa Ostroff-Gundrum 814-235-1376

CLARION Kathy Baker, RN 814-221-8407

CLEARFIELD Susan Bender 814-342-1889

CLINTON Teresa Kodish 570-753-8878

CRAWFORD Linda Bauer 814-382-0230

DAUPHIN Carol Lupkie 717-564-1170

ELK Lynn Hoffman 814-781-6493

FAYETTE Roxanne Ridgely 724-529-2402

FOREST Donna Confer 814-755-4410

FRANKLIN Kathleen Rollins 717-264-7099

GREENE Linda Husenits 724-833-4761

HUNTINGDON Ruth Hockenberry 814-448-3152

LANCASTER Tammy Hoover 717-721-1625

LAWRENCE Elvira Francazio 724-658-7826

LEBANON Greg Keiper 717-273-2094

Jackie Brubaker 717-450-3336

LEHIGH Lisa Ross 610-398-2156

LUZERNE Cynthia Donlan 570-956-0072

LYCOMING Beth Good 570-398-1355

MERCER Lee Gall 724-253-2182

MCKEAN Mary Dynda 814-362-4546

MIFFLIN Brenda Fike 717-899-7737

MONROE Barb Bourgeous 516-582-9719

NORTHUMBERLAND Nancy Stuckey 570-473-1210

PIKE Barb Bourgeous 516-582-9719

POTTER Brenda Bonczar 814-274-8529

SCHUYLKILL Jackie Ritzko 570-691-6935

SOMERSET Dolores Wasylczak, RN 814-445-8684

VENANGO Cathy Graf 814-797-2725

WARREN Dave & Helen Slocum 814-726-8643

WASHINGTON Vickie Law 724-258-6198

WAYNE Barb Bourgeous 516-582-9719

WESTMORELAND Carla Bates 724-797-7936

Christine Hoke 412-558-1247

WYOMING Carrie James 570-836-2810

YORK Denette Reed 717-252-3610

Deb Downs 717-699-0475

Counties without a current representative. Please Contact Pittsburgh Branch Office at 1-800-800-5776

19

HARRISBURG BRANCHCHAMBERSBURGSummit Health Center Call for dates and timesContact Kathleen Rollins 717-264-7099

LANCASTERLancaster General Health CampusThird Sunday of the month 4:30-6PMContact Tom Spaeder 717-394-8989

PITTSBURGH BRANCHCLARION4th Friday each month 11-12:30pm.Clarion Forest VNA, Clarion, PA. Contact Kathy Baker, RN 814-221-8407

UPMC PASSAVANTThird Tuesday each month 7 pmContact Chris Callen 724-759-1021

POCONO/NE BRANCHHAZLETONBowl ArenaSecond Tuesday each month 7 pmContact Cynthia Donlan 570-956-0072 LEHIGH VALLEYAllentownFourth Saturday each month 11AM-1PMGood Shepherd Health & Tech CenterContact Lisa Ross610-533-9586

STATEWIDE ONGOING MONTHLY SUPPORT GROUP PROGRAMS

TELEPHONE SUPPORT GROUPSECOND Wednesday each month -7:00 pm-8:00 pm

Get the latest information, as well as support, without leaving your home. All you need is a telephone. To receive your call-in instructions, contact the Pittsburgh Branch at 412-261-5886 or toll free 1-800-800-5776

The Lupus Foundation of Pennsylvania gratefully acknowledges the volunteer efforts of the many that have led support groups over the years. Through their generous contribution of time and talent, many individuals and their families and friends gained knowledge and support in dealing with this chronic disease. From time to time, these leaders are not available and the group does not meet. We are always interested in speaking with someone who may be interested in organizing a new group in their area. This person is not expected to have all the answers; rather a willingness to share and organize. The Patient Services Director would work hand in hand with the individual to be prepared to take on this rewarding activity. Anyone wanting more information is welcome to contact Marian Belotti, RN at the foundation to learn more.

Like The Lupus Foundation of PA to receive regular, updated information about lupus and happenings around the foundation.

Like Congressional Lupus Caucus which was established as a forum for members of congress to support lupus research, awareness and understanding of the disease

Like Lupus Research Institute which promotes and supports research on SLE prevention and treatment.

LUPUS FOUNDATION OF PENNSYLVANIAPittsburgh BranchLandmarks Building100 West Station Square Drive Pittsburgh, PA 15219

NON-PROFIT ORG.U.S. POSTAGE PERMIT #1945Pittsburgh, PA

Our Mission:TO PROMOTE AWARENESS, EDUCATION, SERVICEAND RESEARCH FOR THOSE AFFECTED BY LUPUS.

Donor Option

WELCOME 2016!!!The Lupus Foundation of PA has a full year of activities planned.

Please join us for any or all of them! We look forward to seeing you! April 2 38th Annual Lupus Luncheon at Eleven April Spring Education Program Spring Lopin’ for Lupus Horse Show June 13-19 Coffee/Beverage concession - US Open - Oakmont Country Club June 7th Annual Ronin Lupus Awareness Picnic and Motorcycle Ride June Annual Smoked Country Jam July 27th Annual Lupus Challenge Golf Tournament at Nevillewood Fall 21st Annual Lupus Loop in Station Square Fall Fall Education Program Nov 2nd Annual Murder Mystery Dinner Nov Annual Holiday Card Sale

If you would like additional information or are interested in attending or volunteering at any of these activities, please contact the foundation at 1-800-800-5776