A rare disease is one with fewer than 200,000 suffers worldwide. I happen to have one of those.
It impacts every aspect of my life and quite literally has threatened my life before. I have a Primary Immunodeficiency. I won't bore you with clinical details. I will, however, explain my experience. I didn't catch this. It isn't contagious. I work hard to maintain the wellness I get. It's often lonely to have something that few understand. I suffer, I plan every part of my day around my energy level, my veins are tired of being accessed, I have to avoid contagions at all cost and despite all of this most people assume there is nothing wrong with me because they are unfamiliar with my condition. I can put on a brave face and most of the time no one would know outside my home. In private, my lungs ache often from bronchitis battles and my nurses anguish over which veins to put my medication in. There's more to it, but I'll keep it as short as I can. I'm not sharing this for sympathy. I'm asking for awareness.
Rare diseases get very little recognition because it's not what people know. Many more well known illnesses get more help because they are seen more by the public. On World Disease Day, I want my friends and followers to post to social media in support of the patients that get ignored so often. I am only one of many and I know the graphic above makes me feel so warm and cared for when I think someone might post that for me and start the conversation about rare diseases and what can help.
Interested in learning how to help people like me, specifically? I will always advocate that, if you can, you should try to donate plasma. Plasma donations save lives of people with my condition. My monthly dose of infusion medication is made from the donations of thousands of people. I depend on these incredible donors and if anyone is interested in learning more, please feel free to ask.
Regardless, check out the link below and maybe use one of those graphics on the 28th to show support. Only takes a second and it won't cost you a dime.
Thanks for hearing me out. <3