As a continuation to the Voices of Rare Disease series, this week is dedicated to patients from GeneFo’s Cystic Fibrosis community who have shared their story with us.
We feel very fortunate to be able to hear these stories first hand, and to also be able to share them with everyone.
Tim Wotton
One of the most challenging aspects is that the non-CF community struggle to 'see' what goes on inside our bodies and how relentless the condition is. Also the severity of the condition and how much treatment is needed every day is little understood.
Kelly Asbell
Being diagnosed at age 10 and now being 38 and a mother of twins I can tell you living with CF is a fine dance between a blessing in disguise and a slow torture. While pregnant I started writing letters to my kids for their important milestones should I not be there. Do I tell you that I’ve learned how beautiful the human spirit can be when a coughing attack hits in the middle of a store and strangers are eager to help? Or do I tell you the story of the same coughing fit at the library with my 8 year old son and the scared look on his face when I couldn’t catch ny breath only to be met with another mom saying to another "we tell our kids not to expose their germs and stay home if they are sick but I guess it doesn’t qualify for parents!". Do I share how scared I am my kids will grow up forgetting me if I leave when my only goal in life was living long enough that they’d remember me? Do I tell you that my kids have learned from the age of 2 how to run and get me kleenex and ice cold water should the monster in my lungs erupt and it looks like a crime scene with me coughing up blood? Do I tell you the blessing it has become seeing compassion in my kids eyes eager to play in the church nursery with a down syndrome child not afraid to love on others who are different? My life is in constant forward motion because of CF being on a race to enjoy every ounce of life before my expiration.
Kelby McKibben
On top of having CF, I also have CF-related diabetes. So I definitely have my plate full. But I do my best not to let that stop me. For the past 6 years I have participated in marching band in school. And I love it. It's my home away from home. But I noticed last year that it was not as easy for me as it had been previously. After a song, I noticed my heart would be racing vigorously and all of my muscles were extremely tired. This year I made the decision to not participate in the marching aspect, but I will continue to show up for support and motivation for others. It's very upsetting to have to put aside something you love to do, something that makes you happy and makes you forget having CF... because you have CF. My father always told me that you can be upset or feel bad about something, but if it's something you can't change, you're only putting yourself through unnecessary misery. I took that to heart. Yes, I have CF. Yes, I have diabetes. But no, I do not let it get me down, and no, I do not let it stop me from being me if I can help it. :)
Ephgenia Hodkevitch
The curse and the blessing of facing a 24/7 life-threatening condition is a topic that moves us since we have become -after the birth of our 2nd daughter, seven years ago- a CF-family. There are moments where the inescapable reality of our daily routines, the social isolation, the never-ending caution and fear lead us to an unknown fatigue and distress. Just like every CF-patient we are spending four hours a day with our child for the necessary treatments, not to cure it, no, just to keep it as healthy as possible! No draw-backs are ever allowed- neither for holidays, celebrations nor because you don’t feel like having CF. Four hours daily routines lead to a ten-months year, two months are our daughters yearly mortgage to Cystic Fibrosis. On the other hand this uncompromising lifestyle, defined by discipline has encouraged her to grow up a tough-minded fighter, focusing her ‘CF-attitude’ on every aspect of her life. CF is defining our daughter - turning her into the competing winner; she probably never would have been without this challenge called CF.