Cure CF Spotlight: Allie

Today we are sharing Allie’s story! She is 26 years old and from Maryland. Her hobbies include anything art & crafts related and going on adventures/ traveling. She has two wonderful parents and two brothers who are both younger than her.

Allie was diagnosed with cystic fibrosis (CF) at age 4 years old. The main issues she was having was digestion and stomach pain. It took awhile for doctors to figure out what exactly was wrong until she was finally diagnosed at age 4 with CF. Allie was fairly healthy growing up and stayed pretty active by playing multiple sports. She didn’t have lung issues until about age 14 when she picked up a first lung infection. Since then Allie has had 10 PICC lines, a dozen hospital stays and 4 lung infections resulting in her lung function to drop to the high 20s. For those that don’t know a PICC line stands for Peripherally Inserted Central Catheter. A PICC line is a thin, soft, long tube that is inserted into a vein of Allie’s arm, leg or neck. The tip of the tube is positioned in a large vein that carries blood into the heart. This is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for blood draws.

Before starting Trikafta in November, Allie was struggling with everyday activities and was seeing a lung transplant doctor twice a year. She started working part time and focusing more on her health. As of now, she’s had a complete change in her health and rarely coughs or deals with the hardship of the disease. 

“I’m able to do activities now that most people don’t think twice about doing. I’m now able to walk up the stairs without getting out of breath (for the most part) wake up and not have to cough my head off, so more during the day without getting exhausted and I’ve gained 15 pounds and am now at a healthy weight!”

Whoo! You go Allie!

Allie’s daily routine consists of the vest & nebulizer treatments usually twice a day. Allie takes enzymes before she eats and trikafta twice a day morning and night. She used to rely on treatments to help clear mucus and feel good but now they are more of a bonus to help keep her healthy.

“The medicine that I am currently taking is Trikafta and it is the best medicine out there right now to help with my specific mutation of Cystic fibrosis. I am so lucky to quality for this life changing drug. Fundraising for CF is so important to help continue and fund the advancements in medicines. My hopes for the future is CF will turn into a manageable disease and people will be able to live longer lives because of it!”

Thank you Allie for sharing your story! We are so glad that Trikafta is helping you everyday! With groups like Cure CF we can raise money for drug trials so better drugs can be on the market to help those with CF. We won’t stop until we find a cure. 

CLICK HERE to donate to Cure CF in efforts to find a cure.

2020-10-28T10:49:33-04:00October 28th, 2020|CF in the News, Featured|

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