V O L U M E 7 N O 2 N E W S L E T T E R O F T H E P A S S P O R T T O W E L L - B E I N G P R O G R A M F A L L 2 0 1 0

V O Y A G EBon Voyage! Travelling with a Bleeding Disorder

The new module of the Passport to well-being program was launched in October at the following events:

Since the Passport to well-being program was established in 2004, every chapter and region across Canada has delivered at leastone of the six modules. And many regions have implemented all six! Chapters are challenged to reflect on how many Passportmodules they have offered to their members over the years. If your chapter has not had the opportunity to present all of the

modules why not plan to offer one in the coming months? For those who have already offered all six, it may be a good time to revisit oneor two of the more popular modules.

CHS M2 Youth Conference– October 15, 2010

New Brunswick Chapter Education Weekend – October 23, 2010

Participants at the events gained new knowledge about how to prepare for a trip, access travel insurance, and get treatment when away from home. During thepanel presentation, people with bleeding disorders shared experiences (good and bad) and, during the role-playing sessions, participants learned newstrategies to use when going through airport security with products and supplies.

Participants were able to get a visa stamp for their passport. They also received a booklet to take home along with a wallettravel card that contains information about how to access care and treatment for bleeding disorders when away fromhome. Among other things, and especially to help globetrotters, the wallet card contains 16 key phrases in English, Frenchand Spanish that can be used in an emergency situation.

As with the other modules of the Passport to well-being program, Bon Voyage! Travelling with a Bleeding Disorder containsresources to enable chapters to deliver a workshop on the topic at local activities. Further information about Bon Voyage!is available on the CHS Web site.

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PASSP RTempowering people with bleeding disorders

to maximize their quality of life

CHAPTERChallenge

The Passport to well-being program is fun and easy toimplement. Each module contains all of the tools a chapter willneed including workshop guidelines, a PowerPoint presentation,and a “take-home” booklet on the theme. The National Office willprovide the passports, visa stamps, booklets and other materialto make your chapter event a success.

We hope your chapter will rise to the challenge of offering all sixmodules by the end of 2011. For more information on thePassport to well-being program please visit the CHS Web site at:

www.hemophilia.ca/en/support-and-education/passport-to-well-being new module

David Pouliot presents the new CHS Travel Card at the M2 Youth Conference.

“The Bon Voyage session was veryhelpful as I often travel with my brotherand it helped me to know what to tell himand what to do if anything happens.”– Sibling of a boy with hemophilia

“The Bon Voyage workshop isexcellent preparation for those not used to travelling.” – Young adult with a bleeding disorder

“The Travelling with a BleedingDisorder session is important intoday’s global world and the modulecovers it well.”– Young woman with VWD from Denmark

L-R: David Page, CHS executive director; David Auld, biopharmaceutical technicalspecialist, Baxter; role-playing actors: Betty Ann Hines, (supervisor); David Wilson,(security guard); Barbara Pepin, (traveller); Dr. H. Elgendy, medical advisor, Baxter.

IN AN EMERGENCY

Role-playing session about getting product through airport security at the New Brunswick Chapter event.

PRofileS

on THe RoaD

My manageable companion: my experiences travellingwith severe hemophiliaBy Alex Little, Calgary, Alberta

When I first sat down in a pub with threefriends and started discussing plans totravel to India and Southeast Asia, I was

overcome with the inevitable feelings of bothexhilaration and nervousness. I was at anacademic crossroads and the prospect of fleeingcommitments at home and finding adventureabroad was enticing. However, as the conversationcontinued, some big inner questions seemed toovershadow the rest. Every thought I had revolvedaround one word: hemophilia.

The hefty expenses of travel and the desire tostay with loved ones are reason enough for manyto stay nestled home on the couch, but in additionto that I also knew that I had a serious bleedingdisorder to deal with. I started asking questionslike: How am I going to get enough product to lastfor a long trip? What are the hospitals like overthere? How am I going to get a bunch of needles and powder through airport security in Thailand? Mostimportantly, how am I going to keep this stuff cold?

I smiled, nodded, and occasionally contributed to fantasized stories with my friends about floating downrivers in Laos, taking 5-day treks in Cambodia, and riding the rails in India. I exhibited a nervous grin as mymind lay conflicted between the adventure I was drawn to and the caution I was taught to take. My long-timefriend, Darshan, sensed my apprehension and assured me that we’d all find a way for it to work. I smiledand we all finished our drinks.

Hemophilia remained at the forefront of my planning for the months before we left. I wasworking full-time and living at home in Calgary to save up money. While at home, my parentsand the hemophilia clinic were my greatest resources. As a start, I knew that I would needmy MedicAlert® bracelet, my FactorFirst card, and a letter explaining my product. Thebiggest challenge was having the forethought to plan ahead to ensure my product

Destination FitnessAlberta Chapter (Southern Region)

Sixty members of the Southern Alberta Region gathered at the Calgary Zoo on Saturday, June 12 for a great day of food and fun. An excellent Destination Fitness presentation on

chair yoga with a certified instructor lead everyone through a series of yoga stretches andposes.The session was followed by a picnic, an informative presentation by Zoo staff, and anupdate by President Susan Anderson and Vice President Stacey Johnson on upcoming eventsand volunteer opportunities. Thanks to all who helped organize this event!

My family’s experience with travel insuranceBy Mylene D’Fana, Beloeil, Quebec

Iremember the day Kevin was diagnosed 14 years ago; with no family history my world had just beenturned upside down. What did all this mean? Would I be able to travel to Florida to be close to my family?Especially, would I still be able to be present at my sister’s wedding that would be taking place in Florida in

two months? Would I be able to travel to the US with my family and my new baby boy? Would I be able to getinsurance for him?

After discussions with our hematologist and nurse at the hemophilia treatment centre, we decided to go aheadwith our plans to spend the next three months in Florida. Up until then, for every family vacation in the US we hadbeen covered by the Blue Cross Shield (BCS) travel insurance. When I called the BCS there was no problem insuring

Kevin. Since he had been born with hemophilia, and nothing had changed inhis medical history in the three months prior to our trip, he was eligible. Ilearned to prepare the factor just in case it was needed. Kevin had neverreceived factor VIII concentrate until the day before our flight when he felldown and hit his head. As a precaution, our hemophilia nurse infused him atthe hospital and, for the first time, I saw the complete process of infusing factor.

Our holiday in Florida was going very well when two days before thewedding Kevin bumped his head on the corner of the bed. We immediatelycalled the HTC in Montreal and asked for advice on what to do. Theyrecommended that he get factor as soon as possible to prevent the bumpfrom getting any bigger. My parents, a doctor and a nurse, were afraid toinfuse their grandchild for the first time. I called the travel assistancenumber from BCS and told them what had happened. They suggested I takehim to the emergency room and that the hospital call them for insuranceconfirmation. We were in and out of the emergency room in less than 2

hours. And luckily the bump on his head could hardly be noticed in the wedding photos! In the following years, we enjoyed many visits with Kevin to Florida for winter and summer holidays with my

family including many trips to Disney World and spent an average of three to four months a year in Florida. OnceKevin was on prophylaxis, my father was the assigned person to infuse him when he was a toddler. After that hecould choose who he would prefer to “poke” him – his grandfather (Abuelo) or his mom. Kevin learned to self-infuse at nine years old during the CHSQ summer camp. This allowed him to go to Florida to visit the family aloneand he spent one entire summer there with his brother. He wore his MedicAlert® bracelet and kept his FactorFirst card and the BCS assistance card with him at all times.

During our vacations in Florida we went to the emergency room with Kevin several times, including oneparticular episode when he cut his forehead open. I remember struggling to remain calm while trying to hold

RESERVE THE DATEJoin the CHS and the localchapter for theseworkshops.

PASSPORT TO WELL-BEING

ON THE ROAD

www.hemophilia.ca

Event: Hemophilia Ontario (SWOR) Winter CelebrationTopic: Bon Voyage! Travelling with a Bleeding Disorder Date: November 20, 2010Location: Strathroy & District Christian School

7880 Walkers Road, Strathroy, Ontario Contact: Terri Lee Higgins – thiggins@hemophilia.on.ca

Event: Hemophilia Ontario (CWOR) Holiday Event Topic: Bon Voyage! Travelling with a Bleeding DisorderDate: November 14, 2010, 2:00 p.m. - 4:30 p.m.Location: Mountsberg Conservation Area, Campbellville, OntarioContact: Alexsandra McGillivray – amcgillivray@hemophilia.on.ca

would stay cold enough. This meant having a rough itinerary and avoiding the long hikes in the wilderness,among other potential risks. In the planning stages, I set out on a quest to find adequate refrigeration for travel.Searches online proved fruitless and I had to accept that backpacking through hot climates for an extendedperiod of time with no itinerary was very difficult for hemophiliacs.

Although an extended trip was appearing unlikely, I instead focussed on making the most out of an initialtwo months in India. We had some places to stay along the way and I was able to plan enough to ensure myproduct would be cold and safe. The biggest mistake I could have made would have been to give up early and nottravel at all. By working with my hemophilia clinic, gathering lists of hospitals and ordering enough factor to lasttwo months, I was able to plan my perfect trip. The support I received was immense and instead of hemophiliabecoming a frightening burden, I learned to treat it like another factor to consider (pun very much intended).

When we finally descended into bustling Chennai, India, I knew that all of my fretting, planning, and flyingwould be worth it. As we began walking about such an otherworldly atmosphere, I was so happy that I decided topursue the trip and take the necessary precautions to make it happen. It was two months filled with spirituality,day trips to temples and rivers, and partying on beaches in Goa. The people I met, the friendships I solidified, andthe settings I marvelled at remain very significant to me three years later. It was a time of contemplation andwonder, and having that freedom was so important to me.

The most important thing to consider, which seems obvious now upon reflection, is that one must beprepared. I travelled, for the most part, with two friends and both of them ended up in hospital for reasons thatcould have easily been avoided with forethought and common sense. One friend, for example, stubbornly left anobviously infected toe to rot in the dirt of India’s filthy streets and let the infection spread to his upper leg; hehad neglected to get travel insurance and his stubbornness translated into a steep bill following a couple ofmonths in hospital. My other friend refused my offerings of bandages when his hands were cut quitedramatically. Ironically, the severe hemophiliac emerged unscathed and was able to explore all the sights andsounds of India, without incident. The preparedness and common sense that is so essential applies not only tothose who don a silver bracelet, but to anyone travelling abroad.

I left my friends shortly after New Year’s to travel back to Victoria and go back to school. I felt a tinge ofsadness because I knew they would be boarding a plane to Bangkok as I entered a lecture hall, but I mostly feltgrateful that I was able to get two months of travelling in and glad that I made the most of it. There were so manytimes in the planning process where the obstacles seemed too great, or the precautions too bothersome and itwould have been easy to call it off. I am endlessly thankful to my hemophilia clinic in Calgary and to my parents

and friends who really wanted me on that plane. With the knowledge that I gained from this experience, I travelled again the following year. I wenton a one-year academic exchange to Canterbury, England and had my product sent to me from

Calgary. Using the same support network, I found ways to travel to France, Holland, theCzech Republic, Denmark, Poland, Wales, Belgium, and all around Morocco. By creatingshorter, worthwhile trips to fascinating places, my hemophilia became only onemorething to consider before taking off.

S t o r i e s f r o m t h e b l e e d i n g d i s o r d e r c o m m u n i t y

Kevin’s cut together, infusing factor into a frightened child and calling the travelassistance number. They advised me to rush him to the hospital. When we arrived at

the emergency medical centre and told the front desk nurse about his hemophilia statushe was bumped ahead of the line in the waiting room. I had to fill out many forms and show

proof of insurance. The doctor and nurse that treated Kevin were wonderful. After treating thecut on his forehead, the doctor requested a cat scan to make sure that there was no internal

hemorrhage. Before we left the emergency room the nurse offered to order factor for us. We told herthere was no need for that as we always travelled withplenty of factor just in case.

We had not yet returned home when the Floridahospital was calling us to make arrangements of paymentfor their services. Somehow they had lost all theinsurance information that I had given them. They weretrying to charge me saying that Kevin was not covered inthe insurance plan. On numerous occasions I gave themthe policy number and the phone number for them tocontact the BCS. They continued to call me back to get meto settle with them. The BCS assured me that “your son iscovered in your travel policy, you have the correctinsurance policy number, do not make payment of thebills, have them call us or send us any billing you receive,don’t worry we will cover the expenses”. One year later Iwas still getting phone calls from a collection agency saying that the hospital had not been paid completely byBCS and I was responsible for the rest. One last time I gave them the information from the BCS and asked for atelephone number for them to be called back. The BCS confirmed that the claim in Kevin’s name had been paidcompletely and they followed up with the company that was still harassing us. Eventually the calls subsided. Irealized that it had likely been a scam.

It has been several years that, due to our travel plans, we have decided to purchase the annual travelinsurance plan that Canadian Automobile Association (CAA) offers. The plan includes trip cancellation, tripinterruption, lost baggage, and travel assistance. The medical care part of the package, which is covered byBlue Cross Shield (BCS), provides coverage for up to thirty continuous days. We make sure that our travel plansfrom the time we leave Quebec and return doesn’t exceed that number of days. To be at ease, Kevin alwaysinfuses before traveling and brings along enough factor. But for sure, we will never travel without insurance!

Kevin D’Fana – 17 months

Kevin D’Fana – 13 years old

L-R: Darshan Rickhi, Alex Little, and Tom Northcote