May is Cystic Fibrosis Awareness month, which culminates in The Walk to Make Cystic
Fibrosis History on May 28. This year, we are raising awareness about cystic fibrosis, and the fight to access to medicine. Throughout the month on this blog we will be sharing perspectives from our CF community, those living with CF and loved ones of CFers, answering some of our big questions.
Today we’re asking: What does a world without CF look like to you?
- “Personally, it looks like an abundant life! I could horseback ride around the ring more than once before having to stop and catch my breath, I would actually have the stamina necessary for my three year old boy and I could speak to clients at work without coughing and making them feel uncomfortable! Lastly, and one that is been on my mind lately, I could take CF out of the equation of deciding to have another child. Will having another child make my health decline the way it did with the first? Therefore, taking my children’s mother away even sooner? #aworldwithoutcf would be fab of you ask me!” – Jess Best, Lives with CF
- “A world without CF is a world with less fear! Less fear of germs, hospitals and everyday kid activities. Less fear that you will outlive your child. Less fear that you won’t see him grow up, go off to school, get married and have a family if he wishes. A world without CF brings in hope to drown the fear!” – Gillian Maramieri, mother to CF champion Matthew
- “A world without CF looks like a world without worrying about the next cold and cough. Being able to pick up and go and not having to worry about having “everything” before we leave the house.” – Cristina and Ryan Kinsella, parents to Quinn who is living with CF
- “Heavenly. For me, it’s a world without constant fear and for my daughter, a world where she can breathe easy, eats whenever she wants and most importantly, live a long and happy life without restrictions and limitations.” – Trish Vendittelli, mother to CF warrior Sloane
- “I don’t know how to answer this question. Because there is no world without CF for myself and many, many others. I’m scared to dare think what it would be like because I would be let down. Again it comes down to getting access to the important drugs like Orkambi, so I may be able to one day think of what it would be like. Until then I fight every day to continue and I have it way better than most. I do take Orkambi for now but until others can get it, and until future drugs don’t have to be fought for, and until no price is put on our lives, I don’t dare think of what it’s like.” – Liam Simpson, Lives with CF
- “A world without CF seems hard to imagine since it is all I’ve ever known. But, a world without having to take puffers, treatments, and medicines, would be pretty great. A world where my family and friends don’t have to worry when I get sick would be amazing. A world where my fiancé and I could just live a more “normal” life, and she doesn’t have to carry around my pills for me, would be sweet. A world without CF would be incredible in so many ways. It wouldn’t change how often I play volleyball, or how I live ever day to the fullest, but it would allow me and my family to take an extra breath (no pun intended) and see a bright future, for not only me, but all CFers and their families too.” – Jordan, Lives with CF
- “Wow, a world without Cystic Fibrosis… I get chills when I think of the possibilities! No more parents devastated by the news that their child has been born with Cystic Fibrosis. Never would another child have to undergo daily aerosol treatments, chest physio and handfuls of pills just to stay alive. No more lung transplants because of Cystic Fibrosis end stage lung disease. I can’t wait to hear the words that CF truly means – Cure Found!” – Brenda Chambers-Ivey, Lives with CF
- “To me, a world without CF would mean that I have 3 extra hours per day to spend with my family, friends, or at work. It would mean being able to set goals and make plans far in advance without the fear that they may need to be cancelled or altered. It would mean actually getting to meet in person some of the dear friends I have met that also have CF and whose support and understanding has helped me get through challenging times.” – Megan Parker, Lives with CF
- “A world without CF would give me deep and humbling sense gratitude and respect and admiration. I would be awed by the perseverance and relentless pursuit of those involved for generations to find a cure. However, life without cystic fibrosis, on a personal level, would largely be the same in terms of my perspective. Cystic Fibrosis has framed my approach to life, provided motivation to never quit, and to believe in the possible; and certainly embrace the present as it is. I would try to live every moment with thanks and love, but I would be able to do and offer so much more, and in that, my life would be profoundly changed.” – Alex McCombes, Lives with CF
- “A world without CF to me means everything. It means less worry and less anxiety about getting sick, making time for treatments, buying purses big enough to fit all my pills and medical supplies, it means being normal! It means parents who won’t have to worry about their children’s futures, and children who can focus on living their childhoods without being different. It means being more carefree, taking more adventures, and planning for a future I am currently unsure of.” – Chelsea Gagnon, Lives with CF
- “A world without CF seems so simple. To have the opportunity to complete college the first time around, have a full-time job, get married, and have my own family seems like a given to most people but to me it is a dream that I hope for every day. To wake up and not have to take a cocktail of pills or have to spend an hour doing breathing treatments just to make it through the day. To not have to spend months in the hospital, 40 days in ICU, and watch my family and friends long to help me but know they cannot. A world without CF means everything to me, and I cannot wait for that dream to one day hopefully becomes my reality.” – Meaghan Macrury, Lives with CF
- “That is a difficult question. I have spent the majority of my life planning with Cystic Fibrosis. I think my personal approach of saying the condition doesn’t define me is correct, it doesn’t, but, I have learned over the years it’s not something I have been naive in lack of consideration. My daily life involves medication, treatment and time management as well as self-care to manage my CF. A world without that would be freeing to me, allowing me to consider perhaps more longer term goals I struggle to find a way in obtaining.” – Jim Best, Lives with CF