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Alopecia Support

Discussion in 'Alopecia Totalis and Universalis Support' started by MattMelia, Jun 22, 2016.

  1. MattMelia

    MattMelia New Member My Regimen

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    Hi, I'm looking for a bit of advice from more educated people.
    My wife recently lost all her hair and has been diagnosed with alopecia universalis, I'm doing my best to support her and trying to learn as much as I can.

    I was thinking of shaving my head, beard and eyebrows off as a gesture of support for her, but a friend of mine advised against it in case she takes offence. So I'm looking for some more opinions, would you find it offensive or see it as a nice gesture?

    I'm trying my best to be supportive as my wife is really struggling and the last thing I'd want to do is upset her even more.

    Any advice is greatly appreciated!

    Matthew
     
  2. Swoop

    Swoop Senior Member My Regimen

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    What happens in AA related disorders is that the immune system starts attacking the hair follicles. So the body sends out a specific type of cells and these "killer cells" start attacking your own hair follicles. What happens subsequently is hair loss as they can't grow anymore as long as these "killer cells" are doing that. Truthfully I haven't read that much into AA as it is of no interest to me, but it probably origins from a genetic level, but might possibly arise from environmental factors too. Don't quote me on that last part though.

    Now a logical thing to combat this would be to take drugs that modulate the immune system... In the past a path to treat the condition could be something like this;

    [​IMG]



    The problem however is that they weren't that good in every case. It didn't always help or maybe a tiny bit. However sometimes it did help much. See here a picture for reference;

    [​IMG]
     
    #2 Swoop, Jun 22, 2016
    Last edited: Jun 22, 2016
  3. Swoop

    Swoop Senior Member My Regimen

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    However recently drugs have been discovered that probably work even better against AA related disorders including Alopecia Universalis. They are called "JAK inhibitors". Here is a case report of a example of a young man getting all his hair back with a drug like that;

    upload_2016-6-22_16-19-14.jpeg

    Or you can look here at a instagram of a woman getting all her hair back pretty much on the treatment; https://www.instagram.com/thealopeciaexperiment/.

    [​IMG]


    That's it on a superficial level really. You'll need to discuss it with a doctor. The problem however of most of these compounds and even these newer "JAK inhibitors" is that they do have a harsh side effect profile. Especially when they are taken systemically (oral, by mouth). However companies are performing clinical trials now with a topical version to limit systemic absorption and thus reduce the side effect profile.

    A potential downfall is also that you might suffer from relapse upon discontinuation of the treatment, but this is not always the case.

    You can already get topical JAK inhibitors AFAIK because pharmacies are already compounding them. Again this is something to discuss with a doctor.

    Good luck, hope that helps. In any case your wife might possibly regrow all her hair, depending on what action she wants to take.
     
    #3 Swoop, Jun 22, 2016
    Last edited: Jun 22, 2016
    hairblues likes this.
  4. JuliiLautert

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    Hi, I lost my hair when I just had turn 4 years old on ONE DAY, at that age I wasn't sure of what was going on but it was really bad for my parents no knowing what was going on with me. they expend every penny they had on treatments from natural stuff to the best doctors and nothing... like everyone says it grows while you are doing the treatment but not much and then goes away and you have to deal with the consequences of the treatment like at some point I was on steroids and I got really obese which was going on the direction of more illnesses. so at my age of 14 years old I decide to stop any kind of treatment on my own and told my parents that I was going to be ok the way I was, because this is only affecting my cosmetics and I could fixed it with a wig and I should complain when there is people out there fighting worst things like cancer and others some no knowing if they are going to even wake up the next morning so base on those thing I AM TOTALLY FINE so far I'm 26 years old had boyfriends that knew my situation and they didn't see any problem now I'm married and my husband loves me just the way I am... about 6 years ago I was going to school for dental assistant one of the classes was with 3 other careers on the health field as well and adults were making rumors about the fact that I had a wig that got me so mad and I stand up in front of 50 people and for the first time I talked openly to others about my situation with ALOPECIA AREATA UNIVERSALIS that gave me so much strong to go and talk about it freely when some one asks and made a huge change on my personal life and I think it helps the way others think as well to not talk with out knowing what others are going thru...
    One of the doctors I saw said that when you have AAU you shouldn't have anything grow on its own and if this ever happen means your chances of your hair coming back will be really high but this happens on its own with out any notice he told me it also can happen after 35 years old when your body has actually finish any kind of developing of any manner.
    I don't tell this story to any one to feel bad I talk about so others feel better, feel that they are not alone and that there is people on really bad situations out there and that beauty is not how you look... one of my friends is experiencing Alopecia now and is on a really hurtful situation and I shared my story with her from beginning to now and she said it did made her change her way too see things your hair is just vanity.!!! all we can do is love are self's the way we are and if our hair grows back great if not at least we know that we can have a great live with out as well. ALWAYS REMEMBER THAT THERE IS PEOPLE OUT THERE ON A WORST SITUATION FIGHTING FOR THERE LIVES "WE ARE FINE AND HEALTHY" with love someone that is being living with AAU for 22 years of her 26 years of life!
     
    Cynthia T. likes this.
  5. Cambodia

    Cambodia New Member My Regimen

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    I have alopecia totalis around 6 years now, and I have treatment that can help me to keep my hair . I knew how it feel when we have this disease. Anyway I'm free if you want to ask how to treat.
     

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