If you were to ask anyone who has a rare disease, they can tell you that it’s not easy living with one. Here you can share what rare disease you have or your experiences of having one (That is, of course, if you are comfortable with sharing them).
I myself was born with a rare disease known as GCH1 Deficiency, an extremely rare disease that causes a deficiency in specific brain chemicals. This is, however, not the exact diagnosis, which is currently unknown. I could go on to share the effects of this disease, but it would make this post much longer than it needs to be.
So simply, for those with rare diseases, you are not alone, and you are not without hope.
My mother wrote this for Rare Disease Day that may give a little more insight as to what classifies as a rare disease, and some of the stuff that both my brother and I (Who both share the same disease) have went through.
I have this big ball of fun: eosinophilic esophagitis (try saying that 3 times fast, or even at all. )
Depending on the disease, it’s not too bad, but if you have something like that disease where your body replaces itself with bone, then yeah, it’s kinda crappy.