Hyper IgE Syndrome (HIES) - IDF Reel Stories, Ronnie Rodes
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- Опубліковано 8 січ 2020
- Ronnie was a good friend of the Immune Deficiency Foundation and we continue to celebrate his life through this video.
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.
Hello, I'm a patient of hyper IgE Syndrom too. I form Germany. I'm happy to found this video. Thank you very much for your effort!
thank you for this video, it has been educational for my medical education
Super thanks!! Had it since birth, been through all of it including retained teeth, Eczema, Asthma, infections and so much much more, and thanks for your video and bringing attention to our condition!! Keep up with the docs everyone share share share.. it's only the past 50 or so years this "orphan" disease has been researched.. Don't give up!!
I just was diagnosed today. So grateful to know what has been making my health so bad for 60 years. Apparently I have outlived the 50 years of life expectancy but it has been hard as I have all symptoms described. What has helped you? Are you in a study?
Hello. After a lifetime of illness and desperate attempts for answers within the medical system, I have just found out I have Job's Syndrome. It is actually a relief to know why I have suffered so long. I would love to volunteer so others like me can get the help they need. Jenny
Hi Jenny! We're so sorry to hear about how painful your journey has been, but we're glad you've found some relief. We'd love your help spreading the word! Here's more information about volunteering: primaryimmune.org/get-involved/volunteer
Me
Just curious....i have Job's. I am an AB negative blood type. Are any of you suffering with this RH negative as well?
i believe i am a undiagnosed person who suffers from hyper ige and one of the reasons ive went undiagnosed is my heavy use of cannabis & edible cannabis oil. it seems to suppress or help promote a more homeostasis in the body but when i suffer from fungal infections i have trouble getting doctors to help most prescribe a steroid cream which is the wrong thing to do. it seem many small town doctors would rather treat their patients like they were making cookies and just repeating he same treatments over and over without helping anyone...
Sir, how were you ultimately diagnosed? My son's lymph node's have been enlarged for over a year & his IGE level is at 2375. His previous two labs had his levels at 1250, then 1569. He's already had one biopsy on a lymph node, but the doctor's can't seem to figure out why his IGE is so high.
Hello,
You can go to the IDF website, www.primaryimmune.org, to submit any questions or inquiries using the Ask IDF feature (the purple icon in the top right hand corner) or go to primaryimmune.org/services/ask-idf
Thanks and be well!
I have hyper immunoglobulin E syndrome, mast call activation syndrome, fibromyalgia, chronic ( pain, migraines, lung infections, sinus infections, hives, sores forming all over my body and more) , tryptasmia, palindromic rheumatism, sjorgrens syndrome, copd, atherosclerosis of the coronary artery, multinodual goiter, asthma, high cholesterol, over weight by 112 lbs (205), type 2 diabetes. I don't have a support system. How do I get in touch with others like me?
My son was diagnosed with this disease 1 week ago. I like to hear more stories.
I happened to be born with it
same. It's totally HE double hockeysticks.
how are you now then? 😢
Hi there. I was just diagnosed with Jobs. Would love to hear how you are dealing with it.
How old is he