Selective IgA Deficiency - IDF Reel Stories, Bethany Potter
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- Опубліковано 3 жов 2024
- 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.
Just found out at 26 I have this, years of my life spent sick with no answers. Now at least I know WHY
My twin sister and I suffer from this. Our level is the same, but I am affected worse. I fell ill with gastritis at age 16, ultimately leaving me with refractory pelvic floor dyssynergia, an unknown IBS-like condition, a temporary colostomy, and a permanent urostomy. I truly hope Mrs. Potter's children find treatments that work. It's a living nightmare every single day.
Thanks for sharing
So many stories to share....nightmare after nightmare! My 20!yr old daughter now is functional but lost so many years to chronic illness. Low but not zero IGA was a massive culprit, found almost by accident and only UA-cam drs helped me comprehend its importance. Drop dead gluten free is essential for her (entire household) plus supplements.
My 1 year old was just diagnosed with this as well. I thought I was going crazy. Kept being told she was fine
I hope they are able to find something to help treat your son.
Prolonged fasting. WITH medical supervision from a DOCTOR.
I have *zero* IgA, IgM and IgG, for 20+ years now. One of the biggest issues is diarrhea, gastrointestinal issues, and a lot of eye/nasal infections, and this is in spite of regular IgG infusions
I have the same thing as your son, my body makes none at all. Have him take vitamin D. It helps me breathe, and to get energized. That is the only thing that substitutes for it for me, I have to take over 100,000 IU a day.
Did you find out what it is? I suffer since about 10 years... and find out today, that that is the problem
IGA deficiency. Take large doses of vitamin D
Did Jack wear a medical alert bracelet? I am looking for one and am sensitive to certain metals and plastics. My IGA number was 0 also.
I know your comment is old, so you may not see this, but maybe it can help someone else. They make silicone medical bracelets now! If you Google "silicone medical bracelets," you should be able to find them.
I don't wear one because I'm only partially deficient, so there's less risk for me.