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Hiya all!
I notice that when asked about my alopecia I tend to talk about how its an autoimmune disease and that we don't really know where it comes from. It's only caused by stress to the point that stress can trigger it, but you have to have alopecia for it to be triggered. Most likely it is hereditary but we don't know how commonly so.
I have said this for the last 15 years and now I realize that this might all be quite dated information. Has more happened in alopecia research? Do we know more of how you get it? And if so, would anyone be able to to point me to good articles about this.
Thank you for your help!
Merit
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Ruxolitinib is the only solution for the AU of my daughter. The problem is the cost. In Italy, where we live, one month cure costs more then 6.000 euros. We buy it in Turkey at 2.350 euros. It's anyway absolutely too expensive.
That sounds like a treatment rather than a cure no? Or is there an end to it?
Thank you, very interesting to read new research.
Thanks Ramil, I appreciate your concern but I am not interested in cure, rather the root causes. Thanks again!
And I hope it works for your son!! Loads of positive support hugs his way!! :)
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Personally I don't think anyone can pinpoint an actual cause and thus not to be a pessimist but I think this makes it harder to find a cure. I think all these posts hit the multiple contributing factors. Since experiencing Alopecia myself I've never really got an answer from the medical community that I dealt with. I was 45 (2007) when I started going through early menopause (hormone changes) and divorce (emotional break/stress). From Thanksgiving to Christmas I lost all the hair on my head then by the end of January my eyebrows/lashes and remaining body hair was gone with never a comforting explanation (I was freaking by this point) from several doctors, "don't worry all women lose hair during menopause"....while presenting them with baggies full of hair! The first person to ever mention Alopecia to me was the girl that used to cut my hair, which was the first time I'd ever even heard about this issue. My mom tells me that she remebers one time in my 20's or so that I had a small round patch missing but I don't remember so I thought nothing about it I guess.
Anyway, after my own research over the years and sites like this I learned it was considered an autoimmune condition, that could or could not be hereditary.
My theory is that the "autoimmune bucket" is just a huge bucket of conditions that cannot be definitively explained. We all have an immune system and we are individuals with different physical/emotional chemical make up. I believe that we all have potentially bad cells in our body that the immune system normally keeps at bay but when our system is physically or emotionally compromise in one way or another these bad cells jump out and take over attacking something in our system....could result in cancer, lupus, celiac, arthritis etc....or alopecia.
I also had allergies pretty severely most of my life growing up so I think my immune system just became used to be overactive.
I however still wonder why it predominantly affects children, maybe because their immune systems are still developing and more suseptible to compromise!?
Although it has been difficult for me I try to remind myself that it could have been something worse and/or debilitating like other autoimmune conditions. Try to focus on the positives - at least I don't have to worry about getting gray, all the $ I've saved on hair products & services, getting ready in mornings is so much faster not having to style my hair, no hair clogged drains, not having to shave etc.....I mostly wear hats so most people think I have cancer but I just tell them I feel fortunate that I don't!
Thanks everyone here for the support and stories!!! Eventhough it might feel like it, we are not alone! Bald and beautiful!