Until I saw it posted on twitter, then on Facebook, I had no idea yesterday was Rare Disease Day.
But it’s kind of cool that it was, since there are entire months for certain diseases and cancers. March is Colorectal Cancer Awareness Month, and one of my dear friends has that, but I bet you didn’t know until I told you that their awareness month is March. Unless you know someone who has it, right? September is Childhood Cancer Awareness Month, and honestly, we need to do more for kids with cancer. Because while no one should ever have cancer, kids especially shouldn’t.
April is Cushing’s Awareness Month. I have a friend who has that, too. And while May is National Stroke Awareness Month, I don’t necessarily feel comfortable claiming that as “my” month.
Because I didn’t just have a stroke. A stroke is just a symptom of Moyamoya, along with the headaches. And the surgeries. And the fear of just . . . seriously, had you ever heard of Moyamoya before you came to my blog? I can tell you it’s no fun being a statistic.
In order to treat Moyamoya disease, I will probably always take aspirin. I will probably always be on a Statin, though I’m trying like heck to reverse that. I will always have to have tests done to make sure it’s not getting any worse. I will hopefully never have to have another surgery.
To all of my people with rare disease, yesterday was for you! [And this post was supposed to be, too, but then life happened. Whoops.]