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Sharing my rare disease story - Hayley Christensen

My name is Hayley Christensen. I work remotely from Raleigh, NC in Talent Acquisition for ICON. My whole world changed on July 7, 2015 when my beautiful and spunky daughter, Graysen, was brought into the world six weeks early. Due to her prematurity, it took 10 months to figure out that there was a greater issue. With diligent care from her pediatrician and the amazing contacts in the clinical research space; Graysen is a Cystic Fibrosis (CF) fighter. She was diagnosed as of May 19, 2016.

CF is a rare genetic disease that is progressive and terminal. In the US, about 30,000 people are living with CF and approximately 1,000 new cases of CF are diagnosed each year.

After her first bronchoscopy, Graysen’s pulmonologist found pseudomonas aeruginosa in her lungs and decided to admit her for a rigorous treatment plan to eradicate the extremely harmful bacteria. Thankfully, I can say, that due to clinical research and her extensive daily treatments, Graysen has not been admitted to hospital since.

Graysen sees her care team (pulmonologist, nutritionist, nurse, respiratory therapist and others) every 10 weeks to monitor for any infections or decline in her health. Because there is no cure for CF, she has a rigorous daily treatment plan that includes pancreatic enzymes at every meal, eats high caloric, salty and fatty foods, three different nebulized medications to keep her airways and lungs clear, and she has over 1 hour a day wearing a high frequency chest wall oscillation device.

Even though this no cure (yet) for CF, I am thankful that she was able to participate in her first clinical trial this year for a modulator that is the closest thing to a cure we have ever seen. I am in awe at the advancements available to her today and very hopeful for the future. It has truly been an experience to working in the clinical trials space, but also from the perspective as a mother to a patient.

I love working for ICON and will forever be grateful for the clinical research aspect of my job and all the hardworking, dedicated professionals who truly seem to have a passion for not only Graysen, but everyone with rare diseases.

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