Common Variable Immune Deficiency (CVID) - IDF Reel Stories, Elizabeth Mills

You’re such a blessing. After years and years of struggles. I’ve seen over 10 specialist and tons of labs. I got Covid19 June 18,2020 and being a long hauler is what landed me in the arms of my angel doctor my immunologist. He just diagnosed me with CVID. You’re message is just what I needed to hear. You’re beautiful and I love your hair wrap... it looks great. I’m excited to gain my health back with treatments and be the mom I want to be. Thank you again! ❤️❤️❤️

She's a lovely lady, I'm glad she had such strong support.

Thank you so much Elizabeth for sharing your story. It's so insightful to hear you talk about your story and the whole process. I learned alot from you today.

Living your life with low bar doctors who can’t think outside the box Finding doctors who raised the bar is unique. Finding doctors who are willing to challenge the issurance company’s for the infusions. More power to you, I diagnosed myself with cvid four years ago just doing my own research. Not even hearing the word cvid before. It’s four years later and I still can’t find a doctor who is willing to think outside the box My numbers float the borderline immunoglobulins .

I could really relate to your story in so many ways. I started getting sick after a bad reaction to a vaccine when I was about 4. I think that I got CVID from the vaccine screwing up my immune system.. I was very sickly. In my early thirties I started getting very sick. I literally felt that I might die, and I got passed around to different docs also. I knew something was really wrong, but could not find out what, until I met a PA ear nose & throat doc. She figured it out and sent me to an immunologist, about 15 or more years ago. I was diagnosed with CVID. I felt so relieved to know what was wrong with my body. Then I started reading about it and I was devastated. It's not a great diagnosis to have. I have been getting weekly sub q infusions for all this time. I do feel much better, not quite normal, but close. It's hard to get the infusions every week. It takes up an entire day, but if that's what have to do to stay alive and feel decent, I'll do it.

Beautiful. Thank you for sharing. I am a medical student - I will definitely keep your story in my mind as I see patients in the future. Inspiring.

I'm learning about CVID in school, thank you so much for sharing your story.

You are a beautiful blessing! Thank you for speaking out. I needed this today. ❤️

That was so inspirational!😊

Thanks, Outstanding,thanks for sharing.

You are such a great person. I wish you all the best

I have CVID to thank you for sharing your story so much overlap with your story and my own

Stay Strong, Like you, I am a CVID Survivor going on 40 years w/ IVIG Replacement. I pray CRISPR Technology eventually make those afflicted with this disease much better one day.

you are soooo strong!!

Anyone who knows about anyone other than Ironmouse and Elizabeth who has this deficiency condition please provide info here. This is a very rare occurrence at no more than four in 100,000.

"You need Xanax" all to familiar nope I need antibiotic/anti-fungal and answers at the bare minimum.