Being diagnosed with a rare disorder is like thinking you’re making a funfetti cake and getting stuck with a lifetime of casseroles.

Start with some fresh general anxiety. Add equal parts stress and increased work pressure. Stir in some other surprise ingredients – think whatever is bad for you in the pantry, or about to spoil. Fold in what you believe is a sprig of a pulled back muscle. Douse the back stiffness in physical therapy and chiropractic care, which magically turns from a bit of back stiffness into scoliosis, and slowly add in an increased number of seizures, memory loss, and a severe change in personality and appetite. Bring all ingredients to a boil with a visit from Dad, who was supposed to bring extra sprinkles, but wound up bringing salt, on accident.

At this point, you don’t know quite what you’re making.  You never took proper cooking classes and you never paid enough attention to learn to cook until now. But, your husband thinks you’re making a funfetti cake.

When you go to try it, it doesn’t taste like any funfetti cake you’ve ever had before. It could be a cake. But, you’re pretty sure it’s not funfetti. Could it be tiramisu or perhaps, tres leches? You pay a local chef to try to help determine what sort of cake you’re making and they tell you you’re making lasagna. That can’t be right. Can it?

Then you seek out a second opinion. They tell you it’s not lasagna, but a very costly casserole of two rare autoimmune disorders! They can’t tell you what, how, or where the ingredients come from, but they can tell you the name. Stiff person syndrome and autoimmune encephalitis. 

The top chef reveals that the casseroles will never end. That’s not ideal because you’re a normal human who wants to do more than eat casserole the rest of your life. But, you have no choice and must eat the casserole until someone can give you a recipe for something else. Preferably a funfetti cake with extra sprinkles.

Most people around you seem to have no concern in learning where the casserole ingredients come from or how they impact your health. They keep making new foods and recipes that they think are cakes, but are probably also casseroles. We might all be contributing to the casserole dilemma without realizing it. Casseroles after all, are a catchall for all the ingredients we don’t seem to know what else to do with. So now I am prepared for a lifetime of casseroles, but no cake. Luckily, I can survive on casseroles. I still dream of having some funfetti cake, even if it’s a tiny piece.


Contributing author, Emily P, is a rare disease patient and advocate.
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