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I have suffered from alopecia areata for most of my life...

Posted , 12 users are following.

Guest
Guest

I have suffered from alopecia areata for most of my life. Aged twelve I lost all my hair, eyebrows, eyelashes and body hair. After 3 years my hair grew back. No sign of eyelashes, brows or (small consolation) leg hair. Girls in the same position, eyeliner can be used to good effect for the eyelashes and if you go to a decent beauty salon then semi permanent make up has proved an absolute blessing in the form of new eyebrows. No more getting out of the swimming pool to find my pencilled eyebrows have remained in the water!!

Over the years I have had many new patches and phases of varying severity, I think I can relate it to stress, and when it happens I know, as I feel a strange tingling feeling in my scalp. As though small creatures are running through my hair, and sure enough out it comes.

At the moment I am going through a pretty bad patch, I look as though I am having some kind of chemotherapy! However the thought of wearing a wig is more horrific than not, and so I persevere as best as I can. The condition is so frustrating and really brings you down, many days I really don't want to get out of bed, don't want to see anyone and certainly don't want anyone near me with a camera. Normally I am confident and outgoing but whenever I have bald patches I feel my confidence disappear.

The things that keep me going are that I have a lovely family and friends who will still love me whether I have hair or not, and that every time before my hair has eventually re grown, (even when I was told it probably wouldn't). So despite feeling desolate and desperate every time I wash my hair or run my fingers through it, I try to put on a brave face and get on with things. As for cures I have tried most of them, Dermovate, injections, Dithro cream, protopic, hypnosis. The most successful was UV light treatment which I had 9 years ago.

It is true that until you have this you don't really know what it is like or just how much it knocks your whole persona and confidence. I also think that it is just as bad for men as for women, the only advantage is that bald men are seen as more visually acceptable than bald women, but if you are the chap removing clumps of hair from the plug hole each day then you will feel little consolation from that fact.

Finally to end on to all the people who say that "It is only your hair" ask them how they would like to shave their head and walk into a room full of strangers, I don't think there would be many takers!!

[i:ca14f313a3]This message was automatically imported from the original Patient Experience[/i:ca14f313a3]

2 likes, 24 replies

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  • Guest
    Guest

    Posted

    Hi all out there. I'm a 44 year old male with FSH Muscular Dystrophy. I have had one small part of alopecia on my beard area for years. It has gone away and came back. This is kind of weird story because i'm reading about kelp helping to grow hair. Well, with me. I was taking high doses of kelp for 3 months. I had cut my own hair once during that 3 month period didn't notice any bald spots on my head. But the second time I cut hair shortly after I was off the kelp. I noticed like 5 to 7 bald spots on top of my head and noticed more bald spots in my beard area with one huge bald area in the beard area. It looks horrible and the hair doesn't seem to be growing back and this is almost 2 months later. I'm wondering if anybody has ever had a baldness problem from too much kelp? I'm sure the kelp has caused this problem because so many bald spots showed up in that 3 month period. I'm looking for answers to helping the hair grow back if there are any.
  • Guest
    Guest

    Posted

    [color=red:9ffbbcdb4e][/color:9ffbbcdb4e][size=18:9ffbbcdb4e][/size:9ffbbcdb4e]

    hi

    im 15 + i first had alopecia at 8. after a year it went away but 2 years ago it came back. i am really struggling at the moment because i am surrounded by teenage girls at school who obsess about their hair. i feel so self concious when my friends do each others hair. i have lost about 2/3 of my hair and i am struggling to find ways of covering the patches as i refuse to wear a wig. i just read your experience and it has comforted me to know i am not alone. i feel having alopecia is one of the worst things a person can have because you loose all confidence.

    at the moment i hate myself because of it and it kind of rules my life. i hate the way im losing my hair before my dad is !!!!!

    • denise_84765
      denise_84765 Guest

      Posted

      Hang in there! I started losing my hair when I was about 11. Many years ago! It's tough being a young lady and losing your hair. Keep your head up. I found a lot of creative "wrap" styles that helped to cover my patches. Keep your scalp clean and drink lots of water.

  • twilson1
    twilson1

    Posted

    in the hope that theres a tiiinnnyy chance anyone would read this, it would be great to start this discussion up again. any luck?
    • abigail80598
      abigail80598 twilson1

      Posted

      Hi there twilson just read this discussion and thought id leave something. Ive has alopecia for 3 years now. Mine happened shortly after being on the birth control patch and over the years has quickly got worse.ive tried treatments including making a reaction on scalp, immune suppressants and steriods. Steriods worked untill I stopped taking them and it all fell back out even the eyebrows I regrew so. My latest try was immune suprrssants but they made me so ill I had to stop. I asked my dermo to let me try steriods again thinking maybe its a hormone imbalance and if doctor puts me on pill it mite help. Anyways before I went doctors I had asked dermo for all my blood results so I can see them myself. Then one day im just doing my own research on alopecia and come across a tricologist site thay says ferritin levels need to be at 80 for maximum hair growth so I instantly pulled out my results id asked for and guess what last year june my ferritin was at 51.4 and october the same year 4 months later it was down to 33. How ever all my doctors dismissed this as normal iron range is between 13-150 for your organs to fuction. But 33 was not enough to supply to hair as well as body. I cant really eat meat im intolorant. Anways last week I asked for a repeat ferritin level blood test. And blow me down its only 26.6. Since the test 1 week ago I have been taking ferrous gluconate 300mg twice a day and would you believe it I have hair growth. Small amounts and not all over but stubbly 3mm hairs and black dots under scalp tht looks like hair not yet come through. Im so happy even if its just the start. Even if the doctors dont really want to help persist x 
  • susanw
    susanw Guest

    Posted

    Well I lost my eyesbrows about 5 years ago, but found a good permanent makeup artist that did 3-D with lines to give the illusion of hair. And now i have eyebrowssmile
  • rshell11
    rshell11 Guest

    Posted

    Omg...I just found your discussion to be so related to what Im going through. I have not suffered from Alopecia Areata ever until several months ago. I Know you posted this over a year ago. I hope you are doing well and this is to whoever out there is going through the same thing. It has been very difficult! Crying, depression, unsolved answers as to why, frustration, and everyting from trying anything and everyting to make it better. The first thing I noticed in this post from the original writer is about the tingling and feeling of tiny creatures crawling EVERYWHERE on your scalp. Almost unbearable  to where you want to rip your scalp apart. Noone can get this unless youve experienced it. It's Unbearable!!! Ive used creams, Shampoos, anything from cocnut oil, tea tree oil, to frankinsense, and anything that was topical from my dermatologist... even had blood work done. Nothing seemed to work. And most frustrating, my blood work came back normal and the doctors couldnt find anything wrong. So today I had a prednisone shot, and Im on prednisone pills, including Xanax for the anxiety I am going through.  And YES...stress is a huge culprit of Alopecia. Tomorrow I visit the dermatologist to have a skin bioposy. Im trying everything!!! I do not want to end up bald. And I want to end this horrible unknown thing that is going on.  I also have to comment again on the original person that wrote this post...I completely GET IT!. I am a very confident woman. I am very social and outgoing. Ever since this has happened, that has all dissapeared. And...In the end, I may have to shave my head and sport a new nose ring,  on top of super cute scarfs and bandanas to make myself feel better. But, Im ready to take this on if be. And as far as friends...anyone who is going through this, surround yourself with true friends who don't give a #$@Q#% and love you no matter what!!! Keep telling yourself you are beautiful and keep the faith!!!! Life could be so much worse. Like losing family members and close friends. Stay healthy and I hope this helps.

  • natasha58567
    natasha58567 Guest

    Posted

    Hi Everyone , 

    I am 26 , when i was 5 i was taken to the dr because i suddenly developed a bald patch just slightly bigger than a 50p coin . 

    I remember the dr saying to come back if it gets bigger or if any more patches appear. 

    Well 21 years later i still have that patch luckily it is under the top section of my hair just above my ear so it is covered , but im just wondering if this was alopecia areata surely it would have progressed within 21 years ? hair has never grown there its never got bigger or smaller it is just there . 

    Any advice would be appreciated . 

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