“We’ve GOT to make noises in greater amounts! So open your mouth lads! For every voice counts!”
Ah, thank you Dr. Seuss.
Rare diseases are tough. And made even more challenging when one constantly has to explain the severity of mitochondrial disease.
But so tired that its hard to move your jaw up and down when chewing food? Or when you walk up a flight of stairs, you feel like your feet are made of concrete?
I do not know this tired. I have seen this tired. And even more extreme, I have seen how a brain that is tired can turn against itself, creating chaos in the form of seizures.
Energy is everything. Energy keeps us alive.
Last Friday I got to sit in a room with the FDA and talk about this energy disease. I sat with parents of impacted kiddos, adults with onset mitochondrial disease and caregivers.
And for a day we were not rare. We were a voice. A collective, impassioned, tired, loud, committed voice. We sat and listened to stories told by our peers, nodded in agreement because not many know the life of mitochondrial disease; the severity, the fear, the unknown of a complex disease.
For a day we were heard; our voices recorded and hopefully taken somewhere within the walls of the FDA where drugs for other diseases could be approved for mitochondrial function, where drugs for orphan diseases could be fast-tracked through approval and supplements could be covered by insurance.
We had an ear for a day.
“Thus he spoke when he climbed and when he got to the top, the lad cleared his throat and he shouted out YOPP!”
My our YOPPs be heard.