Today is Rare Disease Day 2024! I am proud to Show My Stripes and identify as an individual living with a rare disease.
I was diagnosed with my rare, congenital heart disease when I was eight years old. While I now understand it affected my in mild ways before I became symptomatic, it would not be until I was in my thirties that I would have my breakthrough cardiac event. After my defibrillator was placed, I would end up having 5 life-threatening cardiac events in 13 months, 3 of which required my heart to be defibrillated in order to regain a normal rhythm.
While the threat of SCA (Sudden Cardiac Arrest) does haunt me, I would not change who I am for anything. Being disabled and having this rare disease has changed me and my life. I would never go back to who I was, no matter how much easier my life was before. Now, I am proud to advocate for others and for the ways I can assist those who are struggling.
If you identify as Rare, never let anyone or anything tell you you’re anything less.
Happy Rare Disease Day!
