02/28/2026
Today is National Rare Disease Day!
So today we celebrate my naynay, my dad, myself and others living rare!
There are roughly 300 million people affected by a rare condition, 50% of them being kids like me.
There are over 7,000 known rare diseases.
Here in the US a condition is considered rare if it affects less than 200,000 people.
Our Spondyloepiphyseal dysplasia condition affects 1 in 100,000 LIVING births.
So here’s the the Zebras of the world like me!
One day hopefully there will be better answers for people living with a diagnosis that has no treatment or cure. There is very limited knowledge on SED and the best that is offered is treatment of symptoms as they occur.
So today we are celebrating by plant shopping, we had breakfast with mawmaw & pawpaw, then headed to the feed to support our community and we love them, and hopefully later will see the planets line up tonight.
What are you doing today and are you celebrating?
