This is not a bookish post. This is a post about the last 49.5 weeks, and a note about the life that begins on Tuesday.
CVID is short for Common Variable Immunodeficieny. In basic terms, the body does not have enough immunoglobulins to protect against illness. Per the NIH, fewer than 5,000 people have this disease. Well, as some of you may know, I have been sick since March 14, 2022, and I finally have a name for it… CVID… and I finally begin treatment on Tuesday.
What is the treatment for this Zebra (Rare) Disease? Immunoglobulin G infusions. These can be done via IV, known as IVIG, however, thanks to my history of anemia and ITP, it would be a lot more complicated for me. Therefore, I will be doing the subcutaneous infusions, weekly, for the rest of my life.
Why am I sharing this? Well, for one thing, CVID is rare. Hypogammaglobulinemia is rare. These are not discovered with routine blood tests. After months of doctors… and I mean a lot of doctors; after a lot of tests and boy, do I mean a lot of tests… (I have had more CTs than most people will have in a lifetime.) After hearing “it might be cancer, but let’s wait and see.” After hearing “I don’t know,” more times than I can count. I want people to be aware of this illness. Most importantly, I want people to be aware of the treatment.
For a dose of IgG, it comes from over 1,000 pints of plasma. IVIG, or subcutaneous IG replacements help treat autoimmune disorders, yet it is always in short supply. Did you know when you donate 1 pint of blood, you can save up to 3 lives? One pint of plasma can help treat 18 different conditions, from severe burns, autoimmune diseases, and cancers.
So, while I begin this new journey, I will be sharing on here and on social media, some updates. In the meantime, if you could take one thing from today’s post, it is this… If you are able, please donate blood or plasma. You can help numerous people around the world.
If you already donate blood or plasma, I want to thank you. You probably have helped save my life.
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