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Recently diagnosed and so many unanswered questions!
I was diagnosed with Alopecia Universalis around Thanksgiving of 09 while I was 6 or 7 months pregnant with my 3rd child. The last picture taken of me was November 6th and I had a full head of hair; the same hair I'd had my whole life. By the 2nd week of December I had lost all of my hair, body hair, eyelashes, and most of my eyebrows. It has been extremely hard for me to cope with this because I have never had problems of any kind up until now and my doctor is telling me that AU usually develops when you are a child or a teenager and also that it is very rare and chances of regrowth are very slim. I have been told that this is not pregnancy related and pretty much there is no clear explanation why this happened to me. I am so confused and have so many questions. This all happened so rapidly and my doctors really aren't helping- in fact my prenatal doctor knows nothing about this condition and just switched me to a different doctor at 8 months pregnant... :( I feel frustrated, confused, alone, and slightly bitter about the whole thing!!! Anyone else that has had a similar experience or just some advice; anything would be helpful. Thank you so much!!!
Replies to This Discussion
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Permalink Reply by Anna Thomas on
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It has been a crazy and emotional experience for sure!! All I had to do was run my fingers through my hair and clumps would come out.. and it was so much worse in the shower... I do have a good wig; I am blessed to have a supportive family who has helped me- I couldn't have afforded a good wig on my own... but I am still embarrassed and nervous to wear it... :-/ And this site has really helped so far- I couldn't agree more! I'd never heard of Alopecia and it helps to know I am not the only one. And seeing all the strong women on here is giving me hope that someday I will feel happy and normal again.
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Permalink Reply by lisa on
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I developed Alopecia Universalis 7 months after my son was born. Prior to that I had mild alopecia areata, during pregnancy my hair was pretty thick and I had no loss but 3 months after he was born it started falling out in clumps. When I went to see my dermatologist at 5months he didn't think I'd lose my hair on my head completely- he thought it would have happened sooner if it was to happen, unfortunately he was wrong and I lost all body hair a few months later. I'm really hoping for regrowth to happen on it's own, in the meantime I wear a wig and I'll have to look into false eyelashes. I'm still waiting for a follow up appointment with him, I know it's autoimmune but I still think hormones have something to do with it.
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Its so frustrating that there seems to be no great answer as to the cause!!! At first I was convinced it was hormones and that once I had the baby my hair would just grow back... but now as I learn more and more it seems less hopeful... :( I am trying to climb out of this state of depression and just accept that I will never have hair and see myself as beautiful again. The doctors I have been seeing have not been very helpful and they all seem baffled by my situation with not only no reassuring answers, but no answers AT ALL!!! I am sick of being in a room full of doctors and they are all looking at me like I am some sort of freak!
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Permalink Reply by Dielle on
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I feel for you with the doctors! They scared me half to death when I first got diagnosed because they made it seem like I was about to die or something.The main reason why they are so unhelpful is because they don't really know why alopecia occurs because the start of hairloss is so varied amongst people with alopecia. Take me for instance I have a twin sister with a full thick head of hair while I have been completely bald since I was 13 with no eyebrows or hair on my arms or legs.We are practically the same person and have done all of the same things but somehow I developed it while she didn't. Your best bet will be google and informational sites about alopecia because they will lay it out in a way that you can understand in a way that you don't feel like you are being stared at. There are some things you should look into though like possible thyroid problems and pretty much any other autoimmune disorders that an endocrinologist can think to test for because they usually run in packs. For example I have hashimotos thyroiditis and alopecia. It is a really hard disorder because there isn't anything you can do to stop it or reverse it, but it does get better. You are going to have good days and bad days and eventually the good ones will outnumber the bad ones. There are times when I think that I look really good without hair and consider going out without a wig but I'm kind of shy so I'm not quite ready to go out in public yet with nothing on my head. Most importantly you need to do whatever is going to make you feel better. I would also highly suggest going to see a psychologist becausse this isn't easy to deal with and it really helps to have someone that you can talk to and just lt it all out in front of. I would also check to see if there are any support groups in your area because getting in touch with other people with alopecia could really help you. All I can say is don't keep how you are feeling all bottled up inside because it only makes it worse, so if you don't feel like talking to anybody about how you are doing then come on here or write in a journal. If you have any questions or you need to talk feel free to drop me a message!
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Permalink Reply by terri on
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Are you sure you don't have telegen effluvium? That can occur when there is a huge stress occurs (perhaps the pregnancy). When my daughter first started to loose her hair it was diffuse and there was no history anywhere in either family of any health issues at all. One doctor told us that she didn't have alopecia, but telegen effluvium. Boy were we happy!! But now we realize that she did have alopecia universalis but it did give us hope for a while.
Anyways, there is a chance with what you wrote above and the good news is telegen effluvium will self correct once the stressor goes away.
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