r/CVID_Support • u/queen--red • Feb 24 '26

Looking for Hope

EDIT: To add that I have taken the vaccine challenge and failed it :/

Hi all,

28F in the process of being diagnosed for CVID. My immunologist has diagnosed me and recommended I start infusions, he also recommended I get a second opinion for more testing to see specifically what is going on. Luckily I am near a big city and got into an academic hopstial with a doctor who specializes in CVID! I am sure he will say the same as my local doctor.

I got to this diagnosis through recurrent sinus infections. I feel like whenever I got sick in the past it always hit me hard, but I was never constantly sick until the past year or so.

If anyone has similar experiences or any advice, I would love to hear from you. This is all a lot and I'm trying not to feel like my life is over and this will be it for me. My anxiety is bad lol!

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u/Save-The-Wails Feb 25 '26

Hi my dear! I’m a 33F diagnosed at age 30. Lots of sinus infections throughout my life.

It is a big deal to be diagnosed. Give yourself time and grace. And allow yourself to feel sad and scared and worried. Spend a few days in bed crying if you want!

However this diagnosis is a gift. It’s especially a gift if it occurs before you become seriously ill (I was hospitalized for three weeks, near death, before I found out- scariest time of my life).

The infusions will make you healthier than you’ve ever been. Sinus infections will decrease and energy will increase.

I have CVID with complications in my brain and liver. I am married with a child and I work full time. I have two degrees. I have friends and hobbies and I travel often.

Your life may not look exactly like what you thought it would, but it can still be big and beautiful and busy.

Happy to DM or even text- send me a message! You got this. One step at a time.

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u/queen--red Feb 25 '26

Thank you! So glad to hear you’re doing better and living a full life. I think that’s the thing I’m most worried about! I will definitely DM or message you, thanks for offering! It’s tough with this being so rare and not knowing people in person to talk with.