Cystic Fibrosis

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"Hello! I am Chelsea and this is my sidekick, Sweet Pea. This past December, my best friend, Lea, passed away from Cystic Fibrosis. Lea was a passionate, positive, inspiring, strong woman, and she never let her illness define her or convince her that she couldn’t do everything she wanted to do. She was a fierce friend and a brilliant nurse, and she loved to explore in order to appreciate the beauty in the world. Lea and I went on several trips together every year, and in honor of Lea’s adventurous spirit, I continue to travel with Sweet Pea by my side and document our adventures. CF is a genetic disease that impacts mostly the lungs and digestive system and Lea had to work hard everyday, taking numerous medications and doing hours of treatments, just to be able to maintain her health. Lea decided early on, however, that she would not let this slow her down or keep her from dreaming big. After connecting with others who had CF through social media, she decided to become more involved in the CF community and help spread awareness for this illness. Through her advocacy work on the podcast she cohosted and her social media platform she co-created, she became a public figure in the CF community. She reached so many people through her work, but also took the time to talk one on one with many people with chronic illnesses to help and support them in whatever way she could. This led her to her dream of creating a foundation that would help improve quality of life for children with CF and other chronic illnesses. Lea passed before the Foundation came to existence, but Lea’s family and friends have worked tirelessly to make her dream a reality. The Lea Marie Faraone Foundation was created in Lea’s honor and to carry out her mission of providing opportunities for children fighting chronic illnesses live a fulfilling life. If you are interested in learning more, please follow LMFF or visit their website, leamariefaraonefoundation.org@cbenney09

 

“I'm Olivia and I was diagnosed with Cystic Fibrosis at 9 weeks of age. I was told I would be lucky to see my thirteenth birthday, but here I am today 26 and thriving! Cystic Fibrosis is a genetic, progressive, terminal disease that affects my lungs and digestive system mostly. CF can be tricky because it affects each patient differently so each story looks different. I have always made the choice to not let CF define me. It is a part of my story, but it does not dictate how I live my life. I have only been in the hospital twice in my whole life which is HUGE for a CF patient. I started running at the age of 18 and have completed 5 half marathons since then. Cystic Fibrosis awareness is important to me because I want to let other CF patients know that CF does not define them. I want to share my story in hopes to inspire not only CF patients, but anyone struggling with a life threatening illness.The AWARE necklace is a great conversation starter to bring even more awareness to CF. I recently launched my own blog on how I fearlessly live life despite CF and I'd love for YOU to follow along.” @livalittletoday

 

“My name is Katie Aryeh and I am 16 years old. My wonderful and extraordinary mother, Ann, passed away from Cystic Fibrosis in 2009, 3 hours after my 7th birthday. Cystic Fibrosis is the most prevalent genetic disease in the world, and there is no cure. While there have been drugs that can greatly improve the lives of patients, they only work for about 50% of the population. I have continued to run a CF Great Strides team in my mom’s honor which we started together when I was 5. For as long as I’ve been able to, I have attended the Cystic Fibrosis Foundation’s annual Teen Advocacy day, flying to Washington D.C. to meet with our country’s congress members to push for funding and support. Like my mom, my Uncle Tom also suffers from CF. While he’s thankfully doing pretty well, more research is needed to ensure that he has a more normal life span, so that his 13 year old daughter won’t also have to lose a parent prematurely. My mom fought long and hard to stay with me as long as she could; even though her ability to do so was taken from her, I will never stop fighting until I find a cure in her honor.” @katiescrusaderscf

 

“My name is Olivia and I am 24. I was diagnosed with cystic fibrosis at the age of 11. Cystic fibrosis is a genetic, progressive and fatal disease. Having CF means that something called a CFTR protein is dysfunctional in my body. Basically, this leads to mucus build up in various organs in the body and can lead to inflammation, infections, respiratory failure and other complications. Mostly, it affects my lungs, causing shortness of breath, coughing, frequent illness and hospitalizations. I currently spend 2 or more hours a day doing lung treatments to keep myself healthy. In the last year, I’ve had 4 hospitalizations and been on countless rounds of oral and IV antibiotics. While it has been a rough year, it has also taught me so much. I have learned the strength of myself and my family. I have also learned to advocate for myself and others, which is so incredibly important. Something many people don’t realize about CF is that it’s considered an invisible illness. You can’t see the damage in our lungs, or the mucus clogging our organs, or the progression of the illness.  While there are multiple problems with CF being an invisible illness, one pops up when we’re working to spread awareness.  It’s hard to spread awareness for an illness where the patients are extremely sick, but they look “fine.” In a situation like this, knowledge is everything. I recently began using my Instagram @olivia.grace.clark as a way to connect with other CFers, while also educating and raising awareness. To everyone working to raise awareness for any cause, thank you for being such an amazing, uplifting and strong community to take part in.” @olivia.grace.clark

Cystic Fibrosis

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