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Alopecia Universalis

Join today to meet, support and share information with others who are also living with all loss of hair on their bodies.

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Latest Activity: Sep 24, 2023

Discussion Forum

Stronger immune systems?

Started by Laura Adams. Last reply by Simahrya Apr 7, 2019. 43 Replies

Fingernails

Started by Stephanie. Last reply by Simahrya Apr 7, 2019. 64 Replies

alopecia univeralisis

Started by janetparsons. Last reply by Kimmbe Oct 12, 2017. 22 Replies

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Comment by Kathleen on May 20, 2014 at 4:01pm

That is one positive of AU... getting ready really fast. 

 Unless I'm attempting to put on false eyelashes, which slows me down considerably.... and involves a lot of cursing.  LOL.  I'm not very good at that.

Comment by Joanne S on May 20, 2014 at 1:17pm

I work in a rheumatology office and deal with many medications that suppress the immune system.

  I do not think there have been studies to indicate that these treatments work and they do carry a fair amount of risk.  If I was in pain and could not continue my daily living activities I would consider it but hair loss while very burdensome psychologically it does not keep me from doing everyday things.  I also agree I would take my eyebrows and lashes back first if I had to choose although I have tattooed my brows and liner and I can get ready in literally 15 minutes including a shower. lol.

Comment by Bernadette on May 20, 2014 at 12:04pm
I tried the autoimmune depressants but they didn't work for me. Also, if they do work, they will only work while you are taking them, & most autoimmune medication can only be taken temporarily, so whats the point really? I think the best course of action is just to accept it. Live in the present, & if that means you have no hair right now, then so be it. I try to look at the positive & have fun wearing different wigs! The eyebrows & lashes were tough for me too. I have since had my brows tattooed on & I have mastered the art of applying false eyelashes.
Comment by Kathleen on May 20, 2014 at 11:04am

I have a similar background.  As a child I had bad ashma and eczema.  I've always been highly allergic, mostly seasonal.  Then at age 16, my hair started to fall out and at around that same time I was diagnosed with hypothyroidism.  The hair on my head fell out really quickly and then spread to my body. I have had AU for 36 years.  Way back when, I tried cortisone shots, lotions, vitamins, etc. but nothing worked.  I've come to the conclusion that this is here to stay.  Really stinks.  I think not having the eyebrows and eyelashes bother me more than the hair on my head, for both aesthetic and functional reasons.  Would love if they found a cure!!!

 

Comment by AllisonHorton on May 20, 2014 at 10:35am

Hey folks, I'm new to this whole things. I have been through pretty much every "treatment" but hve had zero luck and have been told by my derm that it won't really change. There's one last ditch effort treatment we can try, immunosuppressants, has anybody had any luck with them? I'm wondering because I have stopped doing any treatment for the last 6 months since my chances of getting any results are small and they will most likely not be permanent. I'm just wondering if anybody knows what's what with this or has had any good or bad views on it. I just want to know what real people think of it and not just what the Dr. says about it since I think they're a little biased.

Comment by dianna on April 26, 2014 at 10:23pm

for me i start to lose my hair now and i get very depress.

Comment by Joanne S on February 28, 2014 at 7:23am

I have AU and Hashimoto's hypothyroid.  I do believe there is a connection between autoimmune disease and alopecia.  Most autoimmune diseases involve some type of inflammation in the body which is also the reason the hair falls out.  I do not think a cure is in the near future as the drugs to treat autoimmune diseases are very potent and the risk vs. benefit to these meds to treat hair loss would be an intense debate.

Comment by kwc on February 27, 2014 at 2:05pm

I too am interested in the large number of AU's that also have other autoimmune issues.  I have had psoriasis since early childhood, diagnosed with hypothyroid at 35, and AU at 41- total hair loss in 2.5 weeks.  Some doctors say there is no connection, but seems like there are studies out there that would suggest otherwise...I'm not even sure that a common link would resolve anything at this point, but somehow knowing if there is one or not would make me feel like I am more aware of why this occurs.

Comment by kimberj on February 26, 2014 at 10:11pm

I am Gluten Intolerant and have autoimmune thyroiditis (Hashimoto's) along with the AU. I see a specialist in Northern Virginia and she has me on a very strict diet. No processed foods or artificial sweeteners and no gluten of course. Hope it all helps.

Comment by Struth on February 13, 2014 at 1:19am

Hi Monika - nicely worded post which has made me respond!

Personally, I have not dairy/gluten/other intolerances but suffered from eczema since childhood.  Got a great steroid cream that sorted out the eczema then, lo and behold, AT then AU.  AU developed when I got pregnant with my daughter and a couple of other major stresses were taking place in my life.  Now have some hair gain - not from any change in diet.  Did however start taking Citalopram and hair has started coming back.  

If that helps find a common link, I'm all for it!  Go well,

Ruth

 

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