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Alopecia-Long Term Sufferers; Do you find studies exclude you?
Hi Good Positive People:)
Have you found that when you apply for studies on Alopecia of any kind, Areata, Totalis, and Universalis that if you've had the disorder for more than 5 years they exclude you from the study? It almost makes me feel hopeless and like me having to live like this doesn't impact me or my life. Why do they do this?
Replies to This Discussion
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Permalink Reply by Pamela on
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No didn't know that. No studies in my area, or should I say within a reasonable drive.
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I’ve seen some studies requiring 7+ years
i guess it depends on the study
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Permalink Reply by dreamscometrue on
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I'd be curious to see those. I would love to participate in one
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Hello, I think you should give them proof of your good cause. After 5 years is a serious time. Frankly speaking, you should connect with my friend from https://ca.edubirdie.com/college-paper-writing-services, he knows a lot about these problems
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Hey Thanks Karian!
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No,I did not know about a 5-year time limit. Funny, I heard that the man whose alopecia universalis was reversed completely (scalp hair, lashes, brows, body hair) by taking Xjelanz had his AU for over 7 years. He started the Xjelanz for psoriatic authritis and had very limited success from the drug for that ailment. But suprisingly and unexpectedly, his hair grew back with the drug. So I am not sure I understand a 5-year limit.
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I forgot to add that this man's hair grew back quite quickly (months).
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I've been AU for almost 30 years, and I have Rheumatoid Arthritis and I'm now taking Humira, for almost 2 months now. I had my daughter check my scalp to see if she saw anything and she says she sees lots of tiny blond hairs and many dark ones all over my head. The RA is till giving me symptoms, but I guess the Humira is doing something to the inflammatory pathway for my AU, and it's my guess Xeljanz will be the one biologic that will reverse everything for me as some of the studies suggest
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Dreamscometrue, I am dancing on air for you!! Thirty years is a long time to have to deal with this rotten disease, and I wish you nothing but the absolute best.
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Thank you! Oh yes, its been quite the journey; the depression, isolation, the hopelessness, having to explain I'm not infectious, the gamut goes on and on. Its tough to deal with this and its even tougher thinking there's no hope. I do see a glimmer of light, and I often wonder if I do get my hair back, will I recognize myself as I was before
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Yes, it is quite a journey. One of the hardest parts for me has always been dealing with the idiotic comments people make (e.g., "It's only hair. At least it's not life-threatening", etc.). I try to tell myself that they are only trying to make me feel better, but I honestly think they are really trying to make themselves feel better! Truthfully, people like us with AU are a vivid reminder to them of the fear of their own vulnerability, and they would rather not think about that. Yet these same people are very sympathetic to cancer victims who lose their hair (TEMPORARILY) due to chemo. I find it appalling that insurance companies will pay for wigs for cancer patients' TEMPORARY hair loss, but will often not cover wigs for alopecia areata patients' LONG-TERM (sometimes PERMANENT) hair loss. We have a disease-a very real disease-and until insurance companies and society in general are forced to are recognize that, a cure or effective treatment to control that disease will be slow in coming. Again, please please keep us all posted on your hair regrowth.
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I will!
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