Primary Immunodeficiency is an inherited disorder characterized by a non-existent immune system or an immune system that does not work correctly.
Oh I see. Thank you for your reply. Symptoms from the last week: I've had a post nasal drip, sore throat and a deep irritating cough with extreme fatigue. I'm just over the worst of the flu - (it's winter here now). My medical cover is almost exhausted - getting treatment here is extremely expensive and I almost always need two different types of anti-biotic courses in order to overcome an infenction / illness - I seem to be falling ill now every two months. Taking off from work because of being extremely ill, is now almost impossible for me to do - I have to go to work every day, no matter how sick or exhausted I am feeling. I'm being treated by a doctor with a three monthly Polygam Infusion of 24 grams. I've had this treatment for over a year now but I can't see or feel any difference really because I'm healthy for a while and then sick soon after again. As a patient I would like to have more information about this disease and different types of treatment options availbale - It would be very nice if the effects of the illness could be made known to the bublic or at least colleagues, friends and family.
Ah, I see your point :-) Here is the kind of data that I know would be useful for some clinicians I work with in the UK: 1 - symptoms from the last week (cough, breathlessness, sputum, nasal discharge, diarrhoea) 2 - effects on life: visits to physician, antibiotic therapy, days off work / school 3 - for home therapy, batch numbers medications and site and number of attempts for needle. So my question is, what other kinds of data would your clinicians find useful, or would you like to collect as a patient? Thank you!
I have an Immunoglobulin Deficiency - all 13 Isotype levels are way below normal. What information are you looking for exactly?
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Autoimmune hearing loss (moderate to severe)
I'm almost always sick and I've become severely depressed about this...
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