Ullrich Awareness Day
Finally, after years of battling and campainging, we now have an official Ullrich Muscular Dystrophy Awareness Day!
It’s a particularly rare form of muscular dystrophy, which you probably haven’t heard of – until now. This awareness day means a great deal to me, since I was born with Ullrich congenital muscular dystrophy 35 years ago.
Ullrich is progressive, which means symptoms become worse over time. There is no treatment or cure.
Growing up with Ullrich
For me, the first signs were dislocated hips, so-called floppiness, and delayed development. I lost the ability to walk, rather abruptly, at age 10, though I could never climb steps or stairs, and needed leg splints until becoming non-ambulant. I wasn’t sad to say goodbye to those splints! Even if it meant having to sit on my bum forevermore.
School, particularly high school, was tough for a number of reasons. I used a manual wheelchair and relied on others to push me. Racing around the playground with my friends at the handlebars was fun. But other times, I was left quite literally stranded, unable to self-propel.
P.E. lessons were traded for physiotherapy, and much time was spent absent due to ill health, hospital admissions, and operations (for example, [...]