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!
Dorothy, I am 68, and I have alopecia universalis which I have only had for 3 years. I had my first episode of alopecia areata at age 24. I never had any treatment; the hair grew back on its own after about 3 or 4 months. Also, I only had one spot about the size of a silver dollar. After that, I would get a spot (always one single spot, same size) about every 5 or 6 years. Again, no treatment whatsoever, and the spot would always fill in with perfectly normal hair after 3 or 4 months. About 5 years ago, I developed a spot which got bigger and bigger, and then numerous other bald spots. I did finally seek treatment as none of the spots filled in by themselves. I had creams, shots, and oral prednizone (20 ml a day for two months). New hair would come, then fall out again. About 7 or 8 months ago, my facial hair came back on its own, has remained and is perfectly normal, as it was before. My question has always been: Why after all these years (decades actually) would the disease develop so quickly and become so aggressive? After all, in the past, the alopecia areata was only one small patch every 5 or 6 years and healed on its own. I have to admit that I am very curious. Has anyone else had my experience?
P.S. Before this, all my life I have always had extremely thick hair. Hairdresser used to cancel all their other appointments for the rest of the day when I would arrive for a cut or color (LOL!)
I have similar experience. I lost my hair (and one eyebrow) when I was 15, it grew back in a couple of years and after that I´ve had smaller patches that come and go. After the birth of my second child the patches started to grow rapidly and it developed to full universalis in a few months. So from having small patches for 20 years to all of a sudden loose ALL bodyhair from lashes to nasal hair in 6 months time.
I haven´t got any explanation from the doctors but i have a strong gut feeling that my hormones are playing a trick. I´m still trying to keep positive and aiming or having the hair back but its also difficult when theres not much to do. I´ve asked about testing hormone balance but I only get the reply that its difficult to test that. Have you ever done tests on hormone levels?
I've seen a top notch endocrinologist in NY many years ago. I had some free floating androgens, but not much else. And while I did have some treatment back then to balance the androgens, it had no positive affect on my hair regrowth. And fact that I did become pregnant twice with no interventions proves that the androgen issues was not big enough to have an affect. Pregnancy affects immunity, which is probably how hair often remains during pregnancy...the affect is often to not have a the body attack the air follicle or anything else it sees as foreign such as a fetus. I personally think, based on what I have read, been told by docs and seen for myself that I have a predisposition to this and that stress kicks on the switch to activate.
Kira, No, I have not had any tests for hormone levels. But that is an excellent suggestion. I have suspected that there might be a link with hormones for this condition to become so extreme and abrupt at such a later age. I had my last period at age 53 or so I thought. Nine months later, I had my very last period at age 54. I never had any symptoms of menopause at all (no hot flashes, night sweets, anxiety, depression, etc.), only cessation of periods. So I am assuming (unscientifically) that I still must have had pretty good estrogen levels. My current alopecia did not start until about age 60, and then became alopecia universalis at about age 64 or so. I appreciate your post and the other posts here regarding hormones. It does seem like a number of people here had their episodes connected to times of hormonal change (pregnancy, postnatal, menopause, etc.). Again, I thank all the posters here for their stories.
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!
I like you started losing my hair after the birth of my first child. And within the year I lost my eyebrows, nose hairs and 80% of my body hair. I wonder if there is a connection.
lately i've been thinking that it's food allergens- today to truly be healthy is hard if you are an allergic person which most alopecians are- i had wicked seasonal allergies as a kid and am still allergic to cats and dogs- I also am allergic to dairy, wheat and most meat (via a pinprick test i took as a kid) Unfortunately I didn't really adhere to this strict diet until a few years ago- but even if you follow it perfectly there are unidentified things in GMO food products (for example splicing a fish gene to make straberries bigger, these things are unmarked) that's why i think eating organics could really make a difference..... It is definitely herditary but what is hereditary is the immune response to go haywire, if we could just figure out what those allergens are that are confusing the system.
Oh, I also wanted to mention that one of my doctors theorized that there is a correlation between Alopecia and other auto-immune conditions. The names of the conditions refer to how your symptoms manifest, but having an auto-immune condition is a systemic thing. I actually have other symptoms related to my auto-immune whacked body (premature ovarian failure and chronic disc herniations related to inflammation). I thought his theory made sense.