Last year -- just one week before my 12th birthday -- my doctor reached out to my family and asked me if I wanted to enroll in a clinical trial. Here's why I decided to say yes.
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For the longest time, I did all I could to deny that I had cystic fibrosis. Eventually I came to own my CF.
How much are you willing to do for a loved one? The answer is simple: anything and everything, right? We advocate for them, make sacrifices to be with them and worry about them constantly. Last year I did all of this, but -- somehow -- still felt pangs of guilt.
Growing up, the term “life expectancy” was always with me, affecting my choices and expectations. Over time, I learned to tune it out and live my life my way.
Growing up with CF was hard, but my parents helped me learn how to cope by both encouraging me to fight and allowing me space to complain.
I struggled with my health for years until I was diagnosed with CF at the age of 19. After starting treatments, my physical health improved greatly, yet the scars on my mental health remain.
As a black man with cystic fibrosis, I am in a minority group within a minority group. I waited my whole life to find someone I could easily relate to until I happened upon a Facebook group for post-transplant patients.
For so long, my identify was defined by beating the odds and achieving a successful career despite having CF. But recently, health complications have forced me to create a new identity focused on self-care. With the help of my support system, I am slowly adapting to this new chapter.
The physical and emotional toll of CF can sometimes make me feel isolated from my peers. But I’ve learned being vulnerable about my struggles can create stronger relationships that make me feel supported and loved.