The HypoPARA-Post Improving Lives Touched by Hypoparathyroidism

Volume 21, Issue 2 1994-2015 2nd Quarter 2015

REPLACE: A Pivotal Trial for PTH 1-84 ~ 9th Int’l Conference ~ Tips to Making Traveling with Hypopara Enjoyable & Safer ~ State/Country Basket Auction ~ Hope For a Healthy Future ~ Let’s Change How We

Think about Living with Hypoparathyroidism ~ Polly’s Pancake Parlor - HypoPARA Reflections

P.O. Box 2258

Idaho Falls, ID

83403 USA

(208) 524-3857 (USA)

(866) 213-0394 (toll free)

E-Mail:

info@hypopara.org

A Tax-Exempt Non-Profit Corporation 82-0505424

Disclaimer Statement

The Hypoparathyroidism Association, Inc. should NOT be used as a substitute for professional medical and psychological treatment. Any suggestions

we may offer in our quarterly newsletter, on our website, or in any e-mail correspondence should be considered as ‘suggestions’ only. Any changes in

your current medical treatment you may want to consider should be discussed with your personal physician and should NOT be undertaken without

his/her concurrence and support to ensure proper medical treatment and follow-up.

Our suggestions and comments are based on our collective experience, both personal and collective. While the suggestions and comments we have

offered have been successful for many individuals, we do not mean to imply they will be successful for every individual and under every circumstance.

Proper medical treatment is intended to be a personal matter between the patient and his/her own physician. Any suggestions or comments offered

are intended to help the patients and their physician(s) determine the best course of action.

Inside this issue:

Jim’s Corner 2

REPLACE: A Pivotal Trial for PTH 1-84 (Natpara®) in Hypoparathyroidism 3

Come to the 9th Int’l Conference on Hypoparathyroidism – Register Today! 7

Tips To Make Traveling with Hypoparathyroidism More Enjoyable and Safer 8

NORD Regional Meetings on Hypoparathyroidism 9

State/Country Basket Auction 9

Hope for a Healthy Future 10

HypoPARA Reflections – Living With Hypoparathyroidism 12

Let’s Change How We Think About Living With Hypoparathyroidism – A Lesson in Love

14

Lakeland Man Wields Art to Combat Condition Affecting His Brain 15

Links to Articles on Hypoparathyroidism 18

THE HypoPARA-Post

Volume 21, Issue 2, 2015

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©2014 HypoPARAthryoidism Association. All rights reserved. No portion of this newsletter, partial or whole, may be reproduced (either

digitally or in print) without permission of the HypoPARAthyroidism Association - info@hypopara.org

Several years ago, NPS Pharmaceu-

ticals invited me to speak on behalf

of the HypoPARAthyroidism Asso-

ciation at a conference of medical

doctors who were some of the lead-

ing experts in the world of Hypo-

parathyroidism.

It was one of the first meetings de-

voted specifically to hypoparathy-

roidism. The resulting paper

helped fuel additional research,

clinical trials and greater under-

standing of a rare medical disorder

which has not been well understood

by medical professionals. They

published their paper,

“Hypoparathyroidism in the adult:

epidemiology, diagnosis, patho-

physiology, target Hypoparathy-

roidism in the adult: epidemiolo-

gy, diagnosis, pathophysiology,

target-organ involvement, treat-

ment, and challenges for future

research”, in the Journal of Bone

and Mineral Research in October,

2011.

On May 7-9, 2015, I had the privi-

lege of speaking at the 1st Interna-

tional Conference on: The Diag-

nosis, Management, and Treat-

ment of Hypoparathyroidism in

Florence, Italy. Helen Dahl Hansen,

head of the HPTH Nordic Coun-

tries, also spoke at the same confer-

ence. I will report on that confer-

ence in the next newsletter.

It is wonderful to see that the medi-

cal community no longer considers

patient associations such as

ours as something to be

avoided at all costs or have nothing

to offer them.

A couple of years ago Dr. Maria

Luisa Brandi, University of Flor-

ence in Italy, asked me to write a

chapter on “Advocacy and Hypo-

parathyroidism in the Twenty-

First Century” for a medical text

book on Hypoparathyroidism,

which was published early in 2015.

We hope to be able to reprint that

chapter on our web site.

We, as an Association, and each of

you as patients with hypoparathy-

roidism ARE making a difference

in the medical community. YOU

are important, and, more important-

ly, your opinion and your thoughts

do matter to physicians.

Our Vision is….To Grow, to

cope, to learn, to hope – towards

a cure.

Our Mission is.....To improve

lives touched by Hypoparathy-

roidism through awareness and

support.

Our Values are.....We strive to be

a reliable, dedicated, accessible,

inclusive, empowering resource

while being compassionate and

professional.

The International Conferences on

Hypoparathyroidism, which we

hold every year in June, are an ex-

tension of who we are and why we

exist. Our vision, our mission and

our goals have been the driving

force behind the HypoPARAthy-

roidism Association since we pub-

lished the first newsletter in the fall

of 1994, and is the driving force

today.

They have become an important re-

source not only for the physicians

who are invited to speak, but have

become a valuable resource for the

patients and caregivers who are able

to attend them each year. We provide

the latest information on hypopara-

thyroidism, as well as information

about dealing with the disorder in

your day-to-day lives. The Food and

Drug Administration, FDA, approved

Natpara (PTH 1-84) as the first hor-

mone replacement therapy for hypo-

parathyroidism. I am certain it would

not have happened this year had it not

been for one of our members who had

a grand mal seizure DURING the 1st

International Conference on Hypopar-

athyroidism in April 2006, which

caught the attention of the FDA and

the speakers who were present at the

time.

The effect of having dozens of hypo-

parathyroidism patients and their

caregivers present along with all the

speakers in the same room at the

same time speaks volumes to every-

one. Over 150 people attended our

conference last year.

Are you planning to attend the 9th In-

ternational Conference in Blooming-

ton (Minneapolis), Minnesota, on

June 4-6, 2015?

Are YOU going to help us make a

difference?

I hope to see and meet each of you at

the DoubleTree Inn in a few weeks.

Jim’s Corner by Jim Sanders, President

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Mannstadt M1, Clarke BL2, Vokes T3,

Brandi ML4, Ranganath L5, Fraser

WD6, Lakatos P7, Bajnok L8,

Garceau R9, Mosekilde L10, Lagast

H9, Shoback D11, Bilezikian JP12.

Efficacy and safety of recombinant

human parathyroid hormone (1-84)

in hypoparathyroidism (REPLACE):

a double-blind, placebo-controlled,

randomised, phase 3 study. Lancet

Diabetes Endocrinol. 2013

Dec;1(4):275-83. doi:

10.1016/S2213-8587(13)70106-2.

Epub 2013 Oct 7.

Abstract

BACKGROUND:

Hypoparathyroidism results in im-

paired mineral homoeostasis, includ-

ing hypocalcaemia and hyperphos-

phataemia. Treatment with high-dose

oral calcium and active vitamin D

does not provide adequate or con-

sistent control of biochemical indices

and can lead to serious long-term

complications. We aimed to test the

efficacy, safety, and tolerability of

once-daily recombinant human para-

thyroid hormone 1-84 (rhPTH[1-84])

in adults with hypoparathyroidism.

METHODS:

In this double-blind, placebo-

controlled, randomised phase 3 study

(REPLACE), we recruited patients

with hypoparathyroidism (≥ 18

months duration) aged 18-85 years

from 33 sites in eight countries. Af-

ter an optimisation period, during

which calcium and active vitamin D

doses were adjusted to achieve con-

sistent albumin-corrected serum cal-

cium, patients were randomly as-

signed (2:1) via an interactive voice

response system to 50 μg per day of

rhPTH(1-84) or placebo for 24

weeks. Active vitamin D and calci-

um were progressively reduced,

while rhPTH(1-84) could be titrated

up from 50 μg to 75 μg and then 100

μg (weeks 0-5). The primary end-

point was the proportion of patients

at week 24 who achieved a 50% or

greater reduction from baseline in

their daily dose of oral calcium and

active vitamin D while maintaining a

serum calcium concentration greater

than or the same as baseline concen-

trations and less than or equal to the

upper limit of normal, analysed by

intention to treat. This trial is regis-

tered with ClinicalTrials.gov, num-

ber NCT00732615.

FINDINGS:

Between June 23, 2009, and Feb 28,

2011, 134 eligible patients were re-

cruited and randomly assigned to

rhPTH(1-84) (n=90) or placebo

(n=44). Six patients in the rhPTH(1-

84) group and seven in the placebo

group discontinued before study end.

48 (53%) patients in the rhPTH(1-

84) group achieved the primary end-

point compared with one (2%) pa-

tient in the placebo group

(percentage difference 51.1%, 95%

CI 39.9-62.3; p<0.0001). The pro-

portions of patients who had at least

one adverse event were similar be-

tween groups (84 [93%] patients in

the rhPTH[1-84] group vs 44 [100%]

patients in the placebo group), with

hypocalcaemia, muscle spasm, par-

aesthesias, headache, and nausea

being the most common adverse

events. The proportions of patients

with serious adverse events were

also similar between the rhPTH(1-

84) group (ten [11%] patients) and

the placebo group (four [9%] pa-

tients).

INTERPRETATION:

50 μg, 75 μg, or 100 μg per day of

rhPTH(1-84), administered subcuta-

neously in the outpatient setting, is

efficacious and well tolerated as a

PTH replacement therapy for pa-

tients with hypoparathyroidism.

With the recent Food and Drug Ad-

ministration (FDA) approval of para-

thyroid hormone PTH 1-84

(NatparaÒ) for the treatment of hy-

poparathyroidism (HPTH) in late

January 2015, it is a most opportune

time to summarize and review one of

the pivotal randomized controlled

trials that led to its approval. When-

ever a new drug “makes it to mar-

ket,” generally the first thing that I as

a physician want to know is what

study, or studies, helped lead to its

approval? Was the study or studies

well-designed? How representative

of a patient sample was the study

population compared to that of the

patients being seen in clinical prac-

tice? These are some of the same

questions that we as HPTH patients

should be asking. This will help us

make our individual choices whether

or not to try starting (or continuing)

on the drug. Having read this article,

I believe the answers to these ques-

tions are “yes.” I will first summa-

rize the study and then provide my

commentary at the end.

INTRODUCTION:

Hypoparathyroidism (HPTH) is a

rare disorder in which there is insuf-

ficient production of parathyroid hor-

mone (PTH). Hormone deficiency

states are usually treated by replacing

the deficient hormone; however,

HPTH is currently treated with large

doses of calcium and activated vita-

min D supplements. This does not

always provide adequate or con-

sistent control of symptoms and

complications from the disease, such

REPLACE: A Pivotal Trial for PTH 1-84 (Natpara®) in

Hypoparathyroidism Summary and Review by: Kim L., M.D.

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as calcifications in the kidney, brain,

and elsewhere; kidney stones; and

kidney dysfunction. Human PTH 1-

34, an active fragment of full length

PTH 1-84 as found in the normal

human body, has been studied as a

PTH replacement in HPTH with

positive results. However, PTH 1-34

(Forteoâ) has a shorter half-life,

requiring two or more injections each

day, and has not been approved for

this indication; Forteoâ is only

approved for osteoporosis. In

contrast, recombinant human PTH 1-

84, which is identical in structure to

the PTH found in a normal person,

has a longer half-life, allowing for

once-daily injections for HPTH.

The objective of the REPLACE study

was to test the efficacy, safety, and

tolerability of once-daily flexible

dose (50 mg, 75 mg, or 100 mg)

regimen of recombinant human

parathyroid hormone 1-84 (PTH 1-

84; i.e., what is now called Natparaâ)

in adults with hypoparathyroidism.

METHODS:

(1) Interventions: Subjects were

randomized in a 2:1 ratio to receive

50 μg per day of PTH 1-84 or placebo

for 24 weeks. Each multidose

injection pen cartridge contained a

clear, colourless solution with 14

doses of an identical injection volume

(0.07 ml) for each dose, irrespective

of treatment group or assigned dose.

The 24-week treatment period began

with a 12-week titration phase, during

which doses of active vitamin D were

reduced and, if possible, eliminated,

followed by reduction in oral calcium

doses, while maintaining serum

calcium at or above the concentration

recorded at baseline. During the

titration phase, the investigator could

increase the daily dose of PTH 1-84

at week 2 to 75 μg and again at week

4 up to the maximum dose of 100 μg

until active vitamin D could be

eliminated and oral calcium could be

reduced to 500 mg per day or less.

Patients then entered a 12-week

maintenance phase, when oral

calcium and active vitamin D doses

were adjusted, and daily dose of PTH

1-84 could be reduced, but not

increased, in this phase.

(2) Study Design and Participants:

Randomized, placebo-controlled,

double-blind registration trial,

recruiting patients aged 18-85 years

who had well-documented HPTH for

18 months or longer from 33

outpatient sites in 8 countries: USA,

Canada, Denmark, Hungary,

Belgium, France, Italy, and the UK.

HPTH was defined as hypocalcemia

(low calcium levels) and documented

PTH concentrations below the lower

limit of normal range, recorded on at

least two occasions within the

previous 12 months. Additional

eligibility criteria included:

requirement for active vitamin D and

oral calcium (≥1000 mg daily)

treatment, normal TSH if not on

thyroid hormone replacement therapy

(or if on therapy, stable dose for ≥3

months), and normal magnesium and

serum 25-hydroxyvitamin D

concentrations and kidney function.

Patients and investigators, including

outcome assessors, were unaware of

treatment assignment throughout the

24 week dosing period.

RESULTS:

(1) Patient Demographics and

Baseline Characteristics: A total of

134 patients were included, with 90

randomized to receiving PTH 1-84

and 44 randomized to receiving

placebo. Most patients were women

(78%), of white race (94% in PTH 1-

84 group and 98% in placebo group),

and average age of all patients was

47.5 years. The most common cause

of hypoparathyroidism was

postsurgical HPTH, and the majority

of these were post-thyroid surgeries

(as per correspondence with one of

the study authors). Average duration

of HPTH was 13 years. At baseline,

average oral calcium dose was around

2100 mg per day and average

calcitriol dose was 0.89 mcg per day.

Baseline average albumin-corrected

total serum calcium levels were

similar between groups (2.12 mmol/L

[i.e., 8.48 mg/dL] in the PTH 1-84

group and 2.15 mmol/L [i.e., 8.6 mg/

dL] in the placebo group). Average

urinary calcium excretion exceeded

300 mg per 24 hours in both groups.

Although not reported specifically in

the paper, baseline PTH levels were

low but not zero/undetectable (as per

correspondence with one of the study

authors). Compliance with injection

was excellent for both groups (98%

in the PTH 1-84 group and 96% in

the placebo group).

(2) Primary Outcome: Propor tion

of patients at week 24 who achieved

all three of the following criteria:

50% or greater reduction from

baseline of oral calcium dose; 50% or

greater reduction from baseline of

active vitamin D dose; and

maintenance of a stable albumin-

corrected total serum calcium

concentration ≥ baseline

concentration and ≤ the upper limit of

normal, but ideally within the target

range of 2.0-2.25 mmol/L (i.e., 8.00-

9.00 mg/dL).

(a) Results for primary outcome:

53% of patients in the PTH 1-84

group achieved the primary

endpoint compared with 2% in the

placebo group (percentage

difference 51.1%, 95% confidence

interval [CI] 39.9-62.3; p<0.0001).

(b) Conclusions for primary

outcome: 50 μg, 75 μg, or 100 μg

per day of PTH 1-84, administered

subcutaneously in the outpatient

setting, is efficacious and well

tolerated as a PTH replacement

therapy for patients with HPTH

(3) Secondary Outcomes: (a)

Proportion of patients who were

able to discontinue active vitamin

D while taking 500 mg per day or

less of oral calcium at week 24;

(b) Percentage change from

baseline in prescribed oral

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calcium dose by week 24; and (c)

Changes in frequency of clinical

symptoms of hypocalcemia during

maintenance (weeks 16-24).

(a) Results for secondary out-

come of proportion of patients

who were able to discontinue

active vitamin D while taking

500 mg per day or less of oral

calcium at week 24: Significant

differences between the PTH 1-

84 and placebo groups in the pro-

portion of patients independent

from active vitamin D and reduc-

tion in oral calcium were appar-

ent from week 3 and continued

until week 24.

(b) Results for secondary out-

come of percentage change

from baseline in prescribed oral

calcium dose by week 24: The

PTH 1-84 group had an average

percentage decrease from base-

line in oral calcium dose of -52%

compared with a 6% average per-

centage increase in the placebo

group, which was statistically

significant. The active vitamin D

dose decreased by -78% and -

30% in the PTH 1-84 and placebo

groups, respectively; also statisti-

cally significant.

(c) Results for secondary out-

come of changes in frequency of

clinical symptoms of hypocalce-

mia during maintenance (weeks

16-24): A smaller proportion of

the PTH 1-84 group (33%) re-

ported clinical symptoms of low

calcium than did those in the pla-

cebo group (41%), although this

was not statistically significant.

(4) Safety and Other Outcomes:

(a) Results of 24-hr urinary cal-

cium excretion: At week 24,

average 24-hr urinary calcium

excretion rates had decreased by

73.6 mg per 24 hrs in the PTH 1-

84 group, vs. 83.8 mg per 24 hrs

in the placebo group (not signifi-

cant). Average urinary calcium

excretion rate in the placebo

group declined by a significantly

greater amount from baseline to

week 8 than in the PTH 1-84 group.

Of note, in the placebo group, this

fall in urinary calcium excretion oc-

curred in conjunction with a rapid

fall in serum calcium to lower end of

the target range; whereas, in the PTH

1-84 group, albumin-corrected serum

calcium concentrations increased at

the start of treatment, despite large

reductions in both oral calcium and

active vitamin D doses, and with still

a slight decrease in urinary calcium

excretion.

(b) Results of serum phosphate con-

centrations: Average serum phos-

phate concentrations were similar (at

upper-normal limits) in both groups

at baseline, but fell significantly

more in the PTH 1-84 group than in

the placebo group by week 24.

(c) Results of serum 25-

hydroxyvitamin D concentrations: Average serum concentrations of 25-

hydroxyvitamin D (25-OH vit D)

decreased more in the PTH 1-84

group (-28.0 nmol/L) by week 24

than in the placebo group (-3.5 nmol/

L). Average serum 1,25-

dihydroxyvitamin D concentrations

were maintained in the normal range

and were similar in both groups at

baseline and at week 24.

(d) Results of adverse events: The

overall incidence of adverse events

(AE) was similar in both groups. By

week 24, 98% of patients in the PTH

1-84 and 100% of patients in the pla-

cebo groups reported at least one

AE, the most common being hy-

pocalcemia, muscle spasm, numb-

ness/tingling (paresthesias), head-

ache, and nausea. A total of ten

(11%) patients in the PTH 1-84

group and four (9%) in the placebo

group had serious AE; and only one

of these was considered treatment

related (hypercalcemia requiring

brief hospital stay in the PTH 1-84

group). This patient has continued

receiving PTH 1-84 for more than 24

months in the subsequent extension

studies without any further epi-

sodes of hypercalcemia (high cal-

cium levels). Hypocalcemia (low

calcium levels) was frequently

reported as an AE in both groups

(26% in the PTH 1-84 group vs.

21% in the placebo group).

DISCUSSION:

This randomized controlled trial pro-

vided evidence that PTH 1-84 re-

placement therapy is effective in

treating HPTH compared to oral cal-

cium and active vitamin D alone

(placebo group). Only 2% of the pla-

cebo group vs. 53% of the PTH 1-84

group reached the primary outcome

(50% or greater reduction in baseline

doses of calcium and vitamin D, and

maintenance of stable serum albumin-

corrected calcium levels (ideally in

range of 2.0-2.25 mmol/L; i.e., 8.00-

9.00 mg/dL). Phosphate levels im-

proved/decreased with PTH 1-84 use,

and 24-hr urine calcium excretion did

not increase. Patients recruited for

this trial were representative of typi-

cal patients seen in clinical practice

with the majority (66%) requiring

high doses of active vitamin D (>0.5

mcg calcitriol per day) and about a

third (31%) requiring high doses of

calcium (>2 g per day).

The 24-hr urinary calcium excretion

in the placebo group was lower at the

end of the trial than at baseline, since

their average serum calcium concen-

tration was also lower at the end of

the study. This finding is therefore

expected, since even small changes in

serum calcium concentrations lead to

substantial changes in the amount of

calcium filtered and excreted by the

kidneys. Although the PTH 1-84

group’s 24-hr urinary calcium excre-

tion did not drop by as much as the

placebo group, this is still an encour-

aging finding since serum calcium

concentrations remained relatively

stable despite reductions in oral calci-

um and active vitamin D. The PTH 1

-84 replacement therapy may have

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this advantage of enhancing calcium

reabsorption from the kidneys, which

ultimately could reduce the risk of

long-term kidney stones and kidney

damage (from nephrocalcinosis).

One limitation of this study was that

the short-term design did not allow

for evaluation of bone and kidney

effects of PTH 1-84 therapy. Another

limitation was that the dose schedule

defined by the protocol did not allow

increase in the study drug dose after

week 5 or to greater than 100 mcg per

day. Thus, it is unclear whether some

patients might have been able to

achieve the primary outcome with

higher doses. Strengths of the study

included the flexible dosing and titra-

tion algorithm, which can be readily

implemented in clinical practice, as

well as the relatively large number of

patients enrolled in this study

(especially considering HPTH is a

rare disease).

In conclusion, the findings of the RE-

PLACE study showed that PTH 1-84

(now known as Natparaâ) is effective

as a replacement for PTH in patients

with HPTH. The 50 mcg subcutane-

ously daily dose is an acceptable

starting dose of PTH 1-84, with possi-

ble increases by 25 mcg up to 100

mcg daily if needed, with concomi-

tant reductions in first calcitriol, and

then calcium supplement doses, with

careful monitoring of serum calcium

and phosphate and urinary calcium

levels thereafter.

COMMENTARY:

Multi-center randomized controlled

trials, like the REPLACE study, are

largely considered the most rigorous

type of study design in clinical re-

search. It is notable that the RE-

PLACE study investigators included

HPTH experts from multiple (33!)

sites/centers, including: Waco, TX,

USA; Pecs, Hungary; Liege, Bel-

gium; San Antonio, TX, USA; New

York, NY, USA; Florence, Italy;

Odense, Denmark; Rochester, MN,

USA; Norwich, UK; Calgary, AB, Cana-

da; Paris, France; Halifax, NS, Canada;

Oakville, ON, Canada; Budapest, Hun-

gary; Philadelphia, PA, USA; Orange,

CA, USA; Boston, MA, USA; Jackson-

ville, FL, USA; Aarhus, Denmark; Van-

couver, WA, USA; Indianapolis, IN,

USA; Lakewood, CA, USA; Liverpool,

UK; San Francisco, CA, USA; Szeged,

Hungary; Chicago, IL, USA; Greenville,

NC, USA; Cincinnati, OH, USA; and

Scottsdale, AZ, USA. The vast majority

of patients were of white race, given the

North American and European geo-

graphic regions. The results of the study

may be less generalizable to people from

other race/ethnicities.

The strict protocol algorithm in weaning

calcium and/or calcitriol in this study

focused on eliminating all active vitamin

D before reducing oral calcium during

titration. This is of clinical importance,

as this titration regimen is a reasonable

one to follow when physicians start pa-

tients on Natparaâ in practice. The defi-

nition of HPTH in this study required

documented PTH concentrations below

the lower limit of the normal range, rec-

orded on at least two occasions within

the previous 12 months. Hence, this

likely explains why Natparaâ is not ap-

proved for those with transient low calci-

um within the first 6-12 months postop-

eratively, since such patients in the im-

mediate postoperative period were not

studied. Future studies would be re-

quired of Natparaâ in that type of situa-

tion, to see if it could help prevent long-

term postoperative HPTH. Besides that,

optimal calcium and/or calcitriol supple-

ment dosing regimens in the immediate

postoperative period also warrants fur-

ther study in terms of prevention of long-

term postoperative HPTH.

The eligibility criteria in this study also

required that patients needed active vita-

min D (calcitriol) and oral calcium

(³1000 mg daily) treatment, had stable

thyroid hormone replacement therapy for

³3 months for those with thyroid disease,

or normal thyroid stimulating hor-

mone (TSH) levels for those without

thyroid disease, normal magnesium

(Mg) and serum 25-hydroxyvitamin

D levels. This is important because in

clinical practice, doctors considering

starting Natparaâ on their patients

should ideally try to ensure stable/

normal TSH, Mg, and vitamin D lev-

els, since those with unstable levels

were not included in the study. How-

ever, it is unclear whether patients

with some fluctuations in their TSH,

Mg, and/or vitamin D levels may still

benefit from Natparaâ as well. It also

leaves open the question of whether

HPTH patients who require LESS

than 1000 mg calcium daily and/or do

not need calcitriol would derive the

same benefit from Natparaâ. Such

patients should discuss their potential

candidacy for Natparaâ carefully with

their treating physician(s), since this

study did not include patients like

them.

I would like to thank all of the tireless

efforts of the HPTH experts, research-

ers, and the study participants from

around the world that made RE-

PLACE and all the other PTH re-

placement studies before it possible.

We are fortunate to finally have this

new drug Natparaâ finally FDA ap-

proved for the treatment of HPTH!

ACKNOWLEDGMENTS:

I would like to thank Dr. Bart Clarke,

Dr. Kelly Liang, and Michele West,

MPH, RN, for their helpful reviews of

this article.

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Come to the 9th International Conference on Hypoparathyroidism –

Register Today! By James Sanders

The 9th International Conference on Hypoparathyroidism will be held on June 4-6, 2015 at the DoubleTree Inn by Hilton

in Minneapolis, Minnesota.

We are so excited! We have planned a powerful program of over 25 lectures and workshops that will not only educate

you about hypoparathyroidism, but will give you tools to deal with the day to day challenges we all face.

Meet new friends, renew old friendships, and meet the very physicians who have worked tirelessly on your behalf for the

past several years.

Knowledge is Power. Register today - https://www.hypopara.org/support-services/conference-info.html

We also have a couple of other things going on in relation to the conference:

State/Country Basket Live Auction – This is raising funds for the Billy Sanders’ Memorial Research Fund. We are

currently raising seed money to help with future research into hypoparathyroidism. Let’s be part of the solution and

make a difference! For more information on the auction – https://www.hypopara.org/article/state-country-basket-

auction.html

2015 Hypopara Awareness T-Shirt – We are currently taking pre-orders for the t-shirt. This year we are offering it in

3 colors. Some people are taking orders from co-workers, family members, and friends. They are then going to submit

the order to us in one batch. Show your support and help raise awareness! See our website (front page) for more

information – www.hypopara.org

[Invitation from the President, James Sanders] - It is difficult for me to believe that the 9th International Conference on

hypoparathyroidism is just a few weeks away. We did not foresee the success of our conferences when we held our first

conference in 2006. Participation has increased with each subsequent conference, and we are getting better with

organizing them each year.

Our Medical Advisors called them “high level scientific symposiums” for patients and caregivers, and they have become

increasingly important to both the speakers and those in attendance. That relationship has helped drive medical

research and clinical trials, and helped to increase the medical community’s knowledge and understanding about

hypoparathyroidism.

We, the patients and caregivers, have benefited as well. Much of the progress in medical research, including the clinical

trials leading up to the Food and Drug Administration’s (FDA) approval of Natpara® in January 2015 to the publication

of important research papers, such as the PARADOX Study, can be traced to our conferences.

Bringing patients and caregivers together in the same room as medical experts has helped promote a symbiotic

relationship that has benefited each of you. Congratulations to each of you who participated in the clinical trials, and

patient studies indeed helped to make a difference in the lives of hypoparathyroidism patients around the world.

I encourage you to make plans to come and to be a part of the conference activities. You will be well fed, both literally

and figuratively, and you can help us make a difference.

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It is almost summer time. Most of us

are thawing out from a pretty severe

winter and the natural tendency, at

least in my house, is to plan a vaca-

tion. When you have a serious ill-

ness like hypoparathyroidism you

have to be extra diligent when you

make your travel plans. I am going to

go through some tips and tricks that

will help you be prepared for any-

thing when you hit the road this sum-

mer.

Traveling by car is my favorite form

of travel. You get to see the beautiful

countryside and you get to spend

hours with your family. My daugh-

ters and I traveled from North Flori-

da to Southern California last sum-

mer and it was fabulous.

The tips I am going to give you are

for the worst-case scenarios. Obvi-

ously I pray that you would not need

any of these tips but you will be

ready just in case.

First, and probably the most im-

portant and easiest thing to do, is to

wear a medical alert bracelet or neck-

lace. I just hit the decade mark with

HPTH and I have worn a medical

alert bracelet for 9 and a half of those

10 years. My husband was the one to

insist on me getting one and if he

ever saw me without it on he would

go ballistic. He would tell me, “Our

kids are little. What if you bottomed

out in the mall or got in a car crash?

You could die before they even fig-

ured out you have HPTH.” Even if it

is a little overdramatic the sentiment

is true. If I can’t speak that bracelet

can speak for me and every medical

professional knows what that jewelry

is for.

Second tip is ICE your phone. ICE

means In Case of Emergency. This is

a contact on your phone that has

listed the people that medical profes-

sionals should call in case of emer-

gency. If you lock your phone with a

pass code then of course this won’t

work but it is a good thing to have on

your phone just in case. Maybe tell

someone else in your party the pass

code for your phone for emergency

situations. This is simple and it is

free. There is actually an app for

your phone called ICE that has a

similar function but it links your lo-

cation up using the GPS in your

phone and some people aren’t keen

on having their phones being tracked.

Third tip for road trips is keep a

thumb drive on your key ring with a

copy of all your important docu-

ments including birth certificates,

drivers license, medical and car in-

surance and any relevant medical

information that an ER doctor may

need in an emergency. Items get lost

or stolen but having all those im-

portant documents on your key ring

will ensure you are ready for any-

thing.

One of the most popular destinations

for families during the summer is the

theme park area in Orlando, Florida.

Living just a few hours away in

North Florida they are the go to va-

cation spot for our family. These

theme parks are awesome, but one

thing you are going to have to do a

LOT of is walking. They estimate

that while inside the park people

walk 8 – 10 miles. When you have a

condition like HPTH walking in the

heat can affect your calcium levels

pretty quickly. I found a solution to

this issue, an Electronic Convenience

Vehicle or ECV. They are the 3 or 4-

wheeled scooters that you drive

throughout the park. You can rent

them at the main gate or you can rent

them at a third party service and they

will deliver it to your hotel and you

can ride the buses to the parks. It can

be a little embarrassing at first but at

the end of the day when you are still

feeling good and can keep up with

your kids when they want to go to the

pool, it is so worth it.

While you are at the theme parks

don’t forget, if you have a handicap

parking permit many of the hotels

will valet park your car for free and

your parking in the Magic Kingdom

is free; small ways to make your va-

cation all the more magical.

Another very popular travel option

today is to take a cruise. I have never

taken a cruise before so I talked with

my travel agent Caren Daniel. She

told me the main thing to remember

when booking a cruise with a serious

illness is to communicate with the

cruise lines. They need to know what

health issues you are facing, what

medications you are taking and if

they should have emergency supplies

on hand like IV calcium. For their

own liability the cruise ship wants to

be ready for any issues that may arise

no matter how unlikely. They are

likely to keep medicines to help

someone who is having a heart attack

or needs IV fluids, but something

like IV calcium is not something they

would prepare for.

Another thing Caren recommends is

purchasing trip insurance and she

recommends getting it privately or

through your agent for cheaper and

more complete coverage than what

the cruise lines would offer. Not only

does trip insurance refund your trip

expense if something happens but

also it covers you health wise while

you are out of the country.

Tips To Make Traveling with Hypoparathyroidism More Enjoyable

and Safer by Cindy Schriver

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State & Country Basket Auction

Here’s a little friendly geographic competition of States and Countries to help support the Billy Sanders Memorial Research Fund. We invite each you to help fill your State (or Country’s) basket for the Live Auction to be held during the

Banquet on Friday night. We ask you provide something from your home State/Country, or from wherever you call home. Make your Hometown proud, celebrate your region’s gifts, and help raise needed money for Hypopara Research! No donation is too big or too small. All proceeds will go to support the newly-named Billy Sanders Memorial Research Fund, named in honor of Billy, an older brother of James Sanders, founder and president, who died as a baby as a result hypoparathyroid complications. If you have any questions or would like to send your donations early, please contact Dana Crumpton at dcrumpton66@gmail.com. See you at the conference!

NORD Regional Meetings on Hypoparathyroidism

By Lauren Rosato, NORD

The National Organization for Rare Disorders, NORD, is sponsoring another series of one-day regional

meetings for hypoparathyroidism for the benefit of hypoparathyroid patients and caregivers throughout the

United States. The schedule for the meetings and their locations are:

May 29, 2015 - Providence, RI

June 13, 2015 - Phoenix, AZ

June 19, 2015 - Pittsburgh, PA

July 11, 2015 - Tarrytown, NY (New York City Metro Area)

July 18, 2015 - Washington, D.C.

For more information see their website at http://www.rarediseases.org/patients-and-families/patient-meetings

Another recommendation is to have a

current passport. Right now most of

the cruise lines do not require a pass-

port to travel with them, but if some-

thing happens to you while abroad

your travel insurance will pay for you

to be flown back to the states to be

treated. If you do not have a valid

passport you will have a tough time

getting back into the country.

Suffering from a chronic illness like Hy-

poparathyroidism can be limiting in a lot

of ways but getting out and enjoying

traveling with your family does not need

to be one of those things that suffer.

With a little advance planning you can

sit back and enjoy your vacation with the

security that even if the worst-case sce-

nario happens you will be ready.

Special thanks to travel agent Caren

Daniel:

www.cruiseshipcenters.com/en-

US/carendaniel/home

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IDAHO FALLS - More than 20

years of hard work and dedication by

an Idaho Falls-based international

organization led to the Food and

Drug Administration approving the

first drug created to treat hypopara-

thyroidism.

Natpara is an injectable synthetic

hormone replacement taken twice a

day. It is being manufactured by

NPS Pharmaceuticals and will be

available to patients later this month

or early April. No price has been set.

James Sanders, president of the Hy-

poparathyroidism Association, has

been trying to raise awareness in the

medical community about the condi-

tion. Hypoparathyroidism is a rare

disease that affects about one in

5,000 people, including Sanders and

his five sons.

The parathyroid glands, a set of

glands the size of a grain of rice, are

nestled against the thyroid gland.

They produce a hormone that tells

the body when and how to use calci-

um. Aside from helping develop

strong bones, calcium also is a criti-

cal electrolyte supporting muscle and

brain function.

Without the hormone produced by

the parathyroid glands, the body can-

not use calcium properly, which

leads to a host of symptoms. Those

symptoms include muscle cramps or

spasms, confused or cloudy thinking

and depression. Some of the more

serious cases include seizures, heart

attacks and death.

“The parathyroid is the last in the

endocrine system to get drug re-

placement therapy,” said Julie Hun-

saker, vice president of the Hypopar-

athyroidism Association, of Idaho

Falls. “Hypoparathyroidism is so

often misdiagnosed as hypocalcemia

(low blood calcium), because that’s

very much what it is.”

When someone with the disease

“crashes” from low blood calcium,

the symptoms often resemble drug or

alcohol overdose and the true cause

can be missed by emergency room

doctors. The disease is so rare, most

doctors never see a single case, let

alone do any serious research on

how it works or how to treat it, Hun-

saker said

“My youngest son went to the ER

last week with seizure after seizure,”

Sanders said. “I’m in stage three kid-

ney failure.”

Hypoparathyroidism usually is

caused by damage to the parathyroid

glands, most often as a result of thy-

roid surgery to treat cancer and other

thyroid issues. Sanders and his fami-

ly are even more rare because it ap-

pears to be genetic, although medical

experts are uncertain of the exact

cause. “I think we’re in the infancy

of understanding this disease in the

medical community,” said Dr. Barry

Bennett of Southeast Idaho Family

Practice in Idaho Falls.

Bennett is a general practitioner, but

his experience treating Sanders and

his family has made him a medical

adviser and consultant on the subject

of hypoparathyroidism. He has spo-

ken at several of the Hypoparathy-

roidism Association’s international

conferences about the disease and

will attend the ninth annual confer-

ence in Minneapolis this summer.

“Now that there is actually a drug

available, I think … there will be

more awareness,” Bennett said.

Sanders originally created the Hypo-

parathyroidism Association in 1994

as a support group for people afflict-

ed with the disease. But as the organ-

ization gained thousands of members

throughout the world, he saw an op-

portunity to use it as a resource for

doctors to conduct research.

“By bringing the doctors and patients

together, (the doctors) were able to

see the suffering,” said Lorraine Bol-

ton, secretary of the Hypoparathy-

roidism Association, of Idaho Falls.

“I think it has brought to light what

(hypoparathyroidism) actually is.”

Before the FDA approved Natpara

the patients’ only option was to take

large amounts of calcium supple-

ments. But too much calcium causes

other health problems, such as kid-

ney stones and even kidney damage.

“I’m relieved,” Sanders said. “All the

work we started 21 years ago is com-

ing to a head. We did something

good. It’s a great sense of accom-

plishment.”

Hope for a Healthy Future By Karen Sarita Ingram, Post Register

First published Mar 11, 2015; reprinted with permission

kingram@postregister.com

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By: Mary Rakos

For as long as I can remember, I have

enjoyed expressing my creativity

through various crafts. Through the

years, I have learned crochet, knit-

ting, wreath and jewelry making, as

well as, the art of stained glass.

In 2012, with the encouragement and

support of my family, I opened ‘Lil

Pumpkin Crafts

www.etsy.com/shop/lilpumpkincrafts

an online store featuring my works.

In 2013, I underwent thyroid surgery.

During the surgery, my parathyroid

glands were damaged and I was later

diagnosed with Post-Surgical Hypo-

parathyroidism.

For a time, ‘Lil Pumpkin Crafts was

put on hold. My main focus was to

learn how to manage my condition

and obtain some stability with my

health. The first year was especially

difficult. However, through educat-

ing myself about HPTH, careful

monitoring of my symptoms, and

being vigilant in obtaining lab work,

I have been able to find a balance that

works for me.

In 2014, I reopened my store and

have been busier than ever. I feel

blessed to be able to continue to do

what I love. Creating something with

my own two hands has always been

able to lift my spirits and brighten my

days.

—————————————

By: Shaunna Coit

I recently celebrated my 4-year Hy-

popara Anniversary. I had a Total

Thyroidectomy on April 13, 2011.

My Hypoparathyroidism was a result

of the surgery. The first 18 months

were a nightmare. The symptoms of

cramps, full body tetany, fatigue,

brain fog, and crippling anxiety con-

sumed my life. My days involved

doctor visits, infusions, trips to the

Emergency Room, labs, tests, re-

search, and very few answers. My

boys were 1 and 3 years old at the

time. I had gone from being an active

mom to needing help just to function

on a daily basis. I did not have any

hobbies or venture outside of my

home very often. I felt like I had lost

myself to this disease.

Over time, I was able to gain a lot of

valuable information and education

from other Hypopara patients via In-

ternet support groups. With their sup-

port and advice, I was able to learn

how to improve, manage, and func-

tion in spite of my symptoms. I slow-

ly began to get more involved with

my kids activities and to return to my

old hobbies.

I quickly found that my hobbies

helped me to forget my daily symp-

toms. One of my hobbies is building

and refinishing furniture. I really en-

joy creating simple rustic pieces as

well as refinishing old pieces that are

outdated, broken, or cast off by oth-

ers. Last year I started a small busi-

ness and I have really enjoyed shar-

ing my creations with others.

I spent my first couple years fighting

against the Hypoparathyroidism and

trying to eliminate my symptoms so

that I could have my life back. I had

to change my perspective a bit to re-

alize that I am blessed to be able to

enjoy my life while I manage this

disease.

My hope for every Hypoparathyroid-

ism patient is that they will come to a

point where they feel like they are

able to triumph over their symptoms

by participating in whatever brings

them joy and peace.

———————————————

By Kathie Cote

I have grown up in my family break-

fast restaurant business. Polly's Pan-

cake Parlor was started in 1938 by

my grand parents, Wilfred "Sugar

Bill" and Pauline Dexter, as a way to

highlight the various maple products

HypoPARA Reflections – Living With Hypoparathyroidism

Collected by Nancy Watson

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that they produced here on their farm.

They took an old wood/carriage shed

and made it a quaint tearoom and ca-

tered to many of the visitors in the

seven grand hotels that are in the sce-

nic Sugar Hill area here in the White

Mountains of New Hampshire.

Over the years our business has

grown by leaps and bounds and re-

ceived lots of national attention. My

husband Dennis and I joined the busi-

ness in 1982 full time and took over

ownership in 2003. The old building

was never built to sustain the pound-

ing it takes from almost 60,000 visi-

tors each season. Nor was it built to

any safe standards and ADA compli-

ancy. For the past 10 years we have

been racking our brains as to how we

could expand without changing a

thing. Every idea we came up with

gave us roadblocks. Two years ago

we finally hired an architectural firm

and had them draw up a set of plans

for a new building built to replicate

the older building.

Now, here is my health back-story. I

have had thyroid nodules for years.

My gynecologist always mentioned

my goiter every year, but it never

bothered me. I would get ultrasounds

but my levels never warranted further

testing. Finally I had a NP that sug-

gested I get another ultrasound. Re-

sults came back showing a new nod-

ule and even though the radiologist

said it was nothing, my NP referred

me to an Endo. I had an FNA and an ul-

trasound and I was sent home with

the assurance that it was most likely

nothing.

Three days later we were sitting in the

architect firm reviewing the new plans

when I got the call from my Endo that

the nodule was positive for papillary thy-

roid cancer. We finished the meeting in a

foggy haze, took the plans with us and

left. The next two months were a quick

succession of doctor meetings and sur-

gery. My surgery was at a teaching hos-

pital and it was same day surgery. I was

told by the surgeon about the 1-2%

chance of temporary or permanent dam-

age to my paras. I was not told that most

likely the very experienced surgeon

would hardly be in the room during my

surgery. My calcium was never checked

before my release later that afternoon. I

was told to chug Tums for a week.

The surgeon's follow up call was taken

by my husband as I was out of the house

so I never talked to him directly and he

told my husband I could stop the Tums.

My follow up with my Endo was 12

weeks later. By this time I was a walking

and talking zombie. Looking back I am

amazed that I was functioning as well as

I did. When I finally saw him I men-

tioned my brain fog, emotional issues,

numbness in hands, feet, and lips. He

said, "Is this something you'd like to

pursue?" Duh! When the results came

back my calcium was at 6.2. He put

me on Calcitriol and slowly I im-

proved. It took me a solid 5-6 months

to start to regain some type of normal-

cy, a new normal of course. I have

been lucky to never go into tetany.

All during this recovery we muddled

along with our plans and running the

business. Finally 8 months later we

took a hard look at our plans. Some-

thing had not felt right and the new

plans did not feel nor look like Pol-

ly's. We dumped those plans and the

architect firm and went with a local

construction firm, basically building a

larger version of our old building.

I often wonder what would have hap-

pened if I hadn't gotten that diagnosis

in the middle of the first planning

stages. As stressful as the cancer diag-

nosis was, along with the permanent

hypopara diagnosis it did give us

pause to think. Should we move for-

ward? What if the cancer comes

back? How will I be able to function

with limited para activity? I have

always been a stoic person that just

"keeps trucking". I decided to not let

this health setback limit me and our

plans have moved forward. We de-

molished the old building last October

after we had closed for the season.

Construction started immediately and

continued straight through one of the

coldest winters on record in our area.

We are now 4 weeks from opening

The original Polly’s Pancake

Parlor

The ‘new’ Polly’s Pancake Parlor

Dennis & Kathie Cote

receiving James Beard

Foundation Awards

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Let’s Change How We Think About Living With

Hypoparathyroidism – A Lesson in Love By Ari Campbell

I was diagnosed with thyroid cancer just over 10 years ago in March of 2005. Because of two surgeries and RAI, I

was subsequently diagnosed with post-surgical hypoparathyroidism – a diagnosis that has been truly life altering for

me. Ove r the last decade, I have known pain, both physical and emotional. I have lost my marriage and myself. I have

found myself and remarried. I have fought against the desire for revenge and learned forgiveness. I have fought to find

my way out of black clouds that covered my thoughts, and I have found true joy. Hypoparathyroidism, as I’m sure

many chronic illnesses do to people, has made me take a deeper look at who I am and what I am able to do. We spend

a lot of time talking about our calcium levels, new treatment options, and how we are feeling, but not a lot of time

about how chronic illness effect our lives. I consider myself among the lucky or blessed.

I always knew that if one hadn’t experienced life with the symptoms we deal with that they couldn’t actually

understand how I felt. People don’t just “get it”. I think on some level, I wanted to believe that those who loved me

did understand though, and this wasn’t always true. Living with someone with a chronic illness is hard. It is hard to

see someone you love in pain, it is hard to not be able to do anything to help, and we can be hard to live with

sometimes. We can’t always keep plans that we have made (if we make plans at all), our moods may not always be

level because, hey – our calcium levels may not always be stable, and don’t forget the medical bills from all of those

medical appointment and blood draws. On another note, we do have to schedule our medications and medication

times pretty precisely so we can minimize our symptoms. Therefore, we are able to keep a schedule – it’s not that we

aren’t able to schedule, we just aren’t able to schedule anything, or remember things like we used to be able to. Some

of us even keep a copy of Christine Miserandino’s Spoon Theory on hand for everyone in our lives to read in hopes

that it may help them understand just a little bit what it is like for us on a daily basis. Sometimes all of this can reduce

us to a blubbering heap of tears on the laundry room floor. No, we aren’t always fun to live with. Even we don’t like

to live with ourselves sometimes.

We are lovable though, and we shouldn’t feel guilty for how hypoparathyroidism has affected us or our lives. What I

day!

To say there has been stress is an un-

derstatement. Throughout this I have

learned how important it is to take

time outs, walks, trips, read and at-

tend concerts. Life can be short, so

“carpe diem” is my motto. Did I men-

tion that also in the past year my el-

derly father was diagnosed with

esophageal cancer and passed away in

November? My mother has had Alz-

heimer's and we finally had to move

her into a skilled nursing facility.

Sometimes I am amazed that I haven't

crumbled through out this whole past

two years. I am very grateful that I

seem relatively stable on low doses of

Calcitriol and calcium. I am also very

grateful for the HypoPARAthyroidism

Association and various support

groups, they have been so very helpful.

HypoPARA Reflections is a patient

section to showcase business, creative

and/ or athletic outlets that many of

us use to show what having hypopar-

athyroidism means to us, or to show

what we have accomplished despite

having our illness. If you would like

to show others your accomplishments

send them to:

nancywatson@comcast.net

We hope to see many of you

“reflecting” on your accomplish-

ments and sharing them in future is-

sues of The HypoPARA-

Post.

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found in my life with hypoparathyroidism is that no matter how well controlled my symptoms are, I am still not the same

woman I was before. I am glad for this too! I do have to pay attention to how much energy I am going to exert every

single day (even on Natpara) so I can be sure I have the energy for the next day. I haven’t been able to do everything I

wanted to do in the same way I may have done it before, but I am still doing everything I ever wanted to do. I work full

time, I have gone back to school full time, I have a family and I have learned to say I cannot do it all on my own.

Asking for help was the hardest thing for me to learn to do. I really struggled with accepting my bad days initially.

Then I accepted my bad days, let them define me and I became “sick”. I wanted my invisible illness to be seen. I think

we do that a lot without even realizing we are doing this. I missed a lot of work. My pain got worse, not just my body

and bone pain, but also my migraines. I was on pain medications. Although I was strictly compliant with my

medications and calcium, I was symptomatic. My calcium levels did fluctuate and tend to run a little low so I had to

have medication adjustments. Understand, none of this was intentional, and it wasn’t until I decided I was sick of being

sick and took some time to look inward that I even realized this was happening. I am also not saying that any of this is

in our heads – that would make me as bad as the doctors many of us have encountered who have made us feel small and

who ignored so many of our symptoms for years! (Thank you to all of the wonderful ones who are out there!) What I am

saying is that our outlook on life can make a big difference in how we feel on a regular basis. I am still just as

symptomatic as I ever was. I twitch daily. I tingle daily. I still get migraines, though with medications adjustments

these are better. I have been off all pain medications for three years. I believe my worsening pain (as does my doctor)

was rebound pain from the medications. Changing the way I was able to see hypoparathyroidism in my life did change

how I felt to some degree.

Finding a balance is important, and was important for me. This is what we all really want – to have our blood levels be

balanced, and to have some balance in our lives. I am not going to pretend my life is perfect, but I am happy about

where I am today. This moment is where I am. I cannot go back and change what has happened and worrying about

tomorrow won’t make this moment in my life any better.

I don’t suggest being naïve about our illness. Stay vigilant, but don’t let it consume you. I participate in clinical trials. I

see my doctor. I talk to other people with this diagnosis. What I don’t do any more is let it define me or control my life

any more than I let anything else define me or control my life. When we change how we think, we can change our lives.

I believe this.

I found my voice in my illness, in my divorce and in my new life. I am my own advocate and I know how to be loved for

who I am. Hypoparathyroidism does not define me anymore. It is something I deal with. I have a diagnosis of

hypertension. I manage it. I have I have learned so much about myself over the last 10 years - good and bad. All of what

I have learned about me, I have learned to love. It has been a lesson in love. Hypoparathyroidism has not been a curse to

me. It has been a blessing in disguise. Not one I would have chosen for myself, but one I have learned to live with.

Everyone has challenges in life; this is one of mine.

Lakeland Man Wields Art to Combat Condition Affecting His Brain By Gary White THE LEDGER

Published: Sunday, October 26, 2014 at 9:14 a.m. Last Modified: Sunday, October 26, 2014 at 9:14 a.m.

Reprinted with permission

LAKELAND | The walls of Davis Yates' home abound with framed images of his "serendipitous art" -- the colorful

results of his computer manipulations of photos and paintings.

A black-and-white print on his dining room table provided a contrast: a scan of Yates' brain. Two blobs of white stood

out against a black background, indicating calcifications the size of marbles.

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The image reflects a rare autoimmune disorder, pseudohypoparathyroidism, that generally results in dementia before a

patient reaches Yates' age of 66.

Yates, a retired dentist, is convinced his energetic pursuit of creative endeavors -- writing children's stories, making

music and creating computer-generated art -- helps explain why he remains mentally sharp despite the disorder.

"In order to work around those blocked synapses -- and they're more easily blocked as you get older -- I have to really

work at it," he said, adding that he wakes each morning with the thought: "What can I create today?"

Yates, a married father of two grown sons, has written manuscripts for a novel and at least 10 books for children and

young adults.

He recently self-published a kids' picture book, "Leaf's Final Journey."

Yates said he endured physical problems throughout his childhood, including numbness, stiffness and muscle spasms

in his hands, but his parents assured him they were all just growing pains.

By the time he was in college, Yates assumed he had some form of epilepsy.

While a student at the University of South Florida, Yates got a preliminary diagnosis of hypoparathyroidism, an

endocrine disorder that disrupts production of a hormone that regulates levels of calcium, phosphorus and vitamin D in

blood and bones. Yates said doctors later decided he has pseudohypoparathyroidism, a variant of the main disorder, in

which receptors fail to recognize the hormone, resulting in low calcium production.

STUDY SUBJECT

When Yates was a dental student at the Medical College of Virginia, the head of the school's endocrinology department

received a grant to study him. Dr. Hershel Estep told Yates he was among just 10 people worldwide with his set of

Davis Yates, above, frames one of his pieces Tuesday in his Lakeland home.

SCOTT WHEELER | THE LEDGER

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symptoms.

The doctor said Yates could reduce the risks by carefully managing his calcium and by thoroughly exercising his mental

faculties.

"With a couple of sentences, he changed my life," Yates said. "I'd already been set free because I'd been dragging along

this ball and chain until I was finally diagnosed.

"When they cut free that ball and chain, I had all kinds of energy."

Yates began taking massive doses of vitamin D, helping to raise his calcium level.

Dr. Khanh T. Pham, an endocrinologist at Watson Clinic in Lakeland, has overseen Yates' treatment for two years. She

said calcification in the brain's basal ganglia, areas of the brain associated with voluntary movements and mental

processes, is common with the condition and creates risks of seizures, Parkinson's disease and dementia.

Because the condition is so rare, Pham said, it's impossible to compare Yates to anyone else she has seen. In general

terms, though, she said studies have shown that engaging in mental activities does improve cognitive function.

After operating a practice for several years in Virginia, Yates returned to Lakeland to buy out a dental office in 1982.

His wife of nearly 40 years, Rosemary, helped manage the practice for most of that period.

Rosemary Yates said that she doesn't recall how she learned about her husband's condition.

"The truth is, he's always played it down," she said. "He doesn't focus on it. It doesn't define him. He almost made light

of it."

One symptom of hypoparathyroidism, a tremor in his right hand, forced Yates to retire from dentistry in 2003. The

following year, cluster headaches and stroke-like symptoms prompted a CT scan, which first revealed his brain

calcifications in the basal ganglia.

Since that point, his creative output has accelerated. His annual tradition of crafting a whimsical Christmas story for his

family blossomed into a regular pursuit.

Yates has one complete 250-page manuscript, "The God Message," about a young woman whose creation of a religious

drama brings opposition from a megachurch.

He has written two sets of chapter books geared toward young readers.

Animal characters figure into much of his writing, such as an opossum whose penchant for frenetic motion draws

admonishment from his stolid mother.

SPREADING OPTIMISM

Since discovering the possibilities of manipulating images with computer programs 2 1/2 years ago, Yates has

generated enough work to fill several computer hard drives.

Pursuing another of his skills, woodworking, he built a detached studio in the backyard as a retreat for recording music,

creating art and writing stories.

Yates said he didn't seek attention for most of his creative endeavors until recently, when he decided that he could use

his writings, in particular, as a way to spread his message that cognitive exercise is powerful preventive medicine.

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1. Surgeons and patients disagree

on the potential consequences

from ...

www.ncbi.nlm.nih.gov/pubmed/2432

5999

by NL Cho - 2014 - Cited by 1 -

Related articles

May 1, 2014 - We also elicited the

perceptions of endocr ine surgeons

regarding the ... controls underesti-

mated the negative impact of hy-

poparathyroidism on ...

2. Brigham and Women's Hospital

- Department of Surgery

www.researchgate.net/institution/Bri

gham_and...of.../publications?...

Conclusions: The impact of postop-

erative hypoparathyroidism on pa-

tient QOL is ... underestimated by

surgeons and subjects receiving sur-

gical consultation. ... at District Hos-

pitals in Developing Countries and

Perceived Bar r ier s to Quality ...

3. Jacob Moalem - Publications -

ResearchGate

www.researchgate.net/profile/Jacob

_Moalem/publications

Conclusions: The impact of postop-

erative hypoparathyroidism on pa-

tient QOL is ... underestimated by

surgeons and subjects receiving sur-

gical consultation. ..... to spend more

time on activities perceived to have

higher educational value.

4. first uk patient information leaf-

let - out now! - Hypopara UK

hypo-

para.org.uk/Files/File/newsletter04r.

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perceptions of HPTH patients with

those of surgeons and pre-op pa-

tients. Dr Dan Ruan recently ... sur-

gery consistently underestimate the

severity and impact of Hypoparathy-

roidism on patient quality of life.‟

This matches our own findings

and ...

5. Full Text - European Journal of

Endocrinology

www.eje-

online.org/content/165/2/345.full

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may present at any age, also in

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Thus, the occurrence of neonatal hy-

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dicing the impartiality of the research

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truncating founder ATM mutation

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6. Hypoparathyroidism and auto-

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Links to Articles on Hypoparathyroidism

Yates knows creativity is not a panacea for all medical problems. He acknowledges having "foggy days," when his

mental faculties lack sharpness and his mood sags.

A few years ago, Yates was invited to speak at an annual conference of the Hypoparathyroidism Association for patients and

specialists in Maryland.

He said the gathering drew about 25 adults and 10 children with the condition.

Recognizing the fear the young patients must have, Yates used himself as an example that a relatively normal life is

possible through following a medical regimen and embracing creativity. He said the meetings were disrupted at least

once a day when a patient had a seizure and needed medical attention.

"That's what these kids were seeing, and these were half the time people not even in their 50s," Yates said. "My message

to the kids was, 'It doesn't have to be that way.' "

_______________________________________________________________________________________________

Gary White can be reached at gary.white@theledger.com or 863-802-7518. He blogs about tourism at http://tourism.blogs.theledger.com. Follow on Twitter @garywhite13.

P.O. Box 2258

Idaho Falls, ID 83406

Phone: (208) 524-3857 or (866) 213-0394 (toll free)

Website: www.hypopara.org

E-Mail: info@hypopara.org

©2015 The Hypoparathyroidism Association, Inc.

James Sanders

To grow,

To cope,

To learn,

To hope –

towards a cure.

The mission on the

HypoPARAthyroidism

Association is to improve

the lives of those touched

by hypoparathyroidism

through awareness and

support.