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

Рет қаралды 7,248

4 жыл бұрын

IDF Reel Stories is a video community designed by the Immune Deficiency Foundation (IDF), to encourage and empower fellow patients and their loved ones affected by primary immunodeficiency (PI). Viewers are able to select from a robust playlist of video testimonials that touch us on some level -- whether as individuals, families or as members of the IDF community. The video stories cover a wide array of issues and topics and can be searched by Status, Patient Life Stage, Messages, Disorders, and Treatment Options.

Пікірлер: 18

@jannataylor292 3 жыл бұрын

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! ❤️❤️❤️

@johnbladykas4885 2 жыл бұрын

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 .

@bluelovely1374 Жыл бұрын

Do you get frequent infections? Are you on and off antibiotics? This has been my life for almost two years and I can't get to the bottom of it. I came upon CVID after tons of research about my problems. I believe I have this as in 2020 my IgA was below normal levels and has been tittering on the edge for a long time. My lymphocytes are also low. My doctor said everything looked good on the blood work even though I had these low numbers and frequent infections. I need immune therapy! Are you getting treatment now?

@annaburns5382 3 жыл бұрын

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.

@-Kailinn- 2 жыл бұрын

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

@Esbro 2 жыл бұрын

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.

@kristenhelmsdoerfer3997 2 жыл бұрын

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.

@lizkody8199 3 жыл бұрын

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

@bustbeel1 3 жыл бұрын

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.

@karriehoskisson9155 3 жыл бұрын

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

@kayonatray 3 жыл бұрын

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

@subhabratadas8419 2 жыл бұрын

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

@immunologylite5658 3 жыл бұрын

That was so inspirational!😊

@johnbladykas6313 3 жыл бұрын

Thanks, Outstanding,thanks for sharing.

@natalieavalon116 2 жыл бұрын

you are soooo strong!!

@probium2832 6 ай бұрын

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.

@IDFvideos 6 ай бұрын

Hi there! We have lots of other videos about CVID, and we have hundreds of people in our community who have been diagnosed with it. Because it's a blanket diagnosis to describe a number of genetic errors, it can often present differently for different people.