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.
I was diagnosed with CVID at age 12 and began monthly IVIG treatments at that time after years of chronic infections. I’ll be 42 in August. It’s difficult to believe I’ve been on gamma treatments for nearly 30 years now, but they’ve greatly improved me quality of life.
I switched to weekly SCIG about 10 years ago and have never looked back. It means more independence, less time in hospitals and fewer infections overall.
The physical and emotional struggles with CVID are real, but gamma treatments really help, as do advocacy and honest dialogue like you have here.
I felt very alone with the disease when first diagnosed due to its rarity and lack of access at the time to modern technology and communication platforms like we have now.
It took me a while to find my own voice in discussing my disease. These days I regularly check CVID and related hashtags on social media to keep up with others discussing their experiences, which is how I saw your post.
I also try to participate with Immune Deficiency Foundation functions and fund raising as often as I can. I did the IDF walk in Chicago a few years ago and it was a fantastic time.
Good luck as you start your SCID journey. I’ll have to check out some of your book reviews, too. I went to grad school for lit and am a lifelong book nerd!
*SCIG journey
WOW! Thank you so much for sharing. I was diagnosed with ITP when I was 21, but this CVID is a brand new world for me. Thank you for letting me know, I am not alone. This has been a painful year, to say the least, but I am looking forward to feeling human again. I have been researching the Immune Deficiency websites. There still isn’t much known, but I can’t imagine how isolating it must have been for you 30 years ago!
I will be sharing more of my journey, in hopes to raise more awareness. Thank you again for sharing. Your journey gives me even more hope.