SonyA OSTENSEN

director

My name is Sonya Ostensen. I am 45 years old with cystic fibrosis. I was diagnosed at 12 when I had chronic digestion and failure-to-thrive issues. During my senior year of high school, I had an upper-left lobectomy but continued with my education until I graduated from Ohio State University with a bachelor’s in environmental science. After working in environmental health for 11 years with the State of Florida, my health deteriorated, and I retired on disability. Feeling the need to be “productive,” I volunteered to manage payroll, taxes, human resources, and insurance for my husband’s civil engineering firm.

Although my PFTs have declined over the years, I have managed to keep my original lungs. I have participated in many drug studies, including the Vertex drug trials for Symdeko. However, I switched over to the new modulator, Trikafta, after FDA approval in November 2019. The results have been nothing short of miraculous for my overall health, as both my PFTs and energy have increased!

I live in Melbourne Beach, Florida, with my husband of 15 years. We have a wonderful 6-year-old daughter. My life was complete with her seemingly impossible birth and now I have both the best and most challenging job ever—being a mom. We also love our furry companions—three cats and a pup. My hobbies and activities include gardening, baking, yoga, making jewelry, walking the beach, traveling with my family, climbing trees, and riding bicycles with my daughter.

Having had limited engagement with fellow CF patients in the past, the CF Roundtable newsletter has been my connection with others journeying through similar experiences. I am excited to contribute and be a part of this amazing organization, as well as getting to know my fellow colleagues. I started reading CF Roundtable more than 10 years ago when my CF coordinator suggested the publication. CF Roundtable has been so resourceful, inspiring, and comforting; I have often laughed and/or cried through many articles relating to various writers’ experiences. It is inspiring and heartening to know we are not alone on the CF journey—as we Breathe One Day at a Time.

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*The CF Roundtable does not give medical advice. Any medical opinions represented in these articles are those of the writer and do not represent the views of USACFA, any of our community partners, or any other group or individual. We strongly suggest you consult your doctors regarding any medical references and before altering your medical regimen in any way. USACFA does not endorse any products or procedures. 

Registered Charity Number : EIN # 93-1036770

© United States Adult Cystic Fibrosis Association 2019

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