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

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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!!

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  • Posted

    I'm 30 and since having the Mirena coil removed about 6 months ago I have developed Alopecia areata. I was given a leaflet from my doctor but was told treatment has little or no effect. sad i'm doing my best to ignore the problem but was relieved to read others had the same experience after the Mirena.

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  • Posted

    I have just discovered a bald patch on my head and I am so angry that after 20 years Alopecia has come back to plague me. The last time I had it I had split up with my husband.

    I beat it before and I will beat it again.

    The stresses I have been through since my 1st experiance are unbeleivable. A daughter who was a teenage runaway I think I was at scholl more often than she was. She went on to marry a man who beat her up and and he was in and out of prison. Once whilst he was in prison she got in with another bad lot and dabbled with Heroin). I am pleased and proud to say she bitterly regrets that part of her life) I have 2 lovely grand children my daughter is now divorced. My house has been burgled and I had a lot of personal belongings stolen and my son suffered the highest loss which hurt us both a lot. To name a few

    I am married for the 2nd time to a good man, happy in my job and have a reasonably comfortable life style so why now? I have many good friends and I am probably the most content I have been in my life. This condition is so cruel and I feel not only for myself but for fellow sufferers.

    I did find the comment regarding the Mirena coil interesting as I have used the Mirena for well over 10 years, but I am off to see my Doctor and will mention this to him and probably arrange to have it removed permantly.

    I would like to say to everyone reading this that,in a lot of cases, Alopecia can be beaten. I have had a full head of hair since my first attack and I will have again. I took Vitamin B+ complex last time prescribed by my Doctor, was also advised to take high doses of Zinc. I am starting this again. Don't know if it works, or if last time it was just the condition running its course but will give it a go. Good luck to all who are reading this.

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  • Posted

    I would be very interested in knowing more about your uv therapy. My daughter has aloepecia areata it always seems to be worse in winter and improves an awful lot in summer. This year I am thinking about getting her a uv lamp and seeing if it helps her. I would be most interested in your reply

    Thanks

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    • Posted

      If she has not tried it already, it could be worth getting her tested for Vitamin D deficiency, it may be co-incidental - but this is knon side effect of being Vit D deficient. Taking Vitamin D supplements that can be bought over the counter is a good start, but if she is tested she can be presribed a much higher dose to kick start off getting back to normal levels.
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  • Posted

    It is 6 weeks since I left a comment on this site and my hair is growing back. I am the lady who has Alopecia again after 20 years. I have been reccomended, by my hairdresser and a few other people, to take Sea Kelp as this can make hair grow faster. I am taking 4 tablets every morning along with my 30g zinc and vitamin B tablets. It is not advisable to take Sea Kelp in the evening as it can speed up your metabolic rate. A friend of mine's husband takes Sea Kelp, he is bald and his hair is regrowing. My husband, bless him, is bald and he is also taking it now. I will let you know how he gets on.

    I have to say the regrowth is certainly quicker that when I first had the condition. My hair is still coming out more than I am happy with but I am hoping it is on the turn around. I also did have my Mirena coil removed and that is probably having an adverse affect on my body.

    Anyway fellow sufferers get yourselves down to Holland & Barratt and you can buy a bottle of 1000 tablets for just under £9.00 thats a lot of tablets for very little outlay. Good luck and hope it works for you as it appears to be working for me.

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  • Posted

    What an excellenmt comment about this distressing disorder.. I have suffered for many years with this condition and i'ts good to know i'm not alone.

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  • Posted

    i am taking 6 tablets of zinc (2 in the morning, 2 during the lunch and 2 in the evening) every day and the same thing with biotin - and this is the only thing that has helped me. i have had alopecia areata since i was a little girl - just a little paches then, and for a long time i didnt have any(maybe 6 years). and then when i was about 19 they appeared again, and it was worse than ever - more patches. so my doctor told me to take zinc and biotin in these amounts - and it helped - after a months or so my hair started to grow back. Now 6 years later they are back again. I thought i try different tretments this time - but nothing helped. So im back to my zinc and biotin and my hair are growing. And there is one more thing i have noticed - i have certain areas where the paches occour. I am 25.

    and as you recommend sea celp i will try it out. thanks!!!!!!!

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  • Posted

    Hello there. I have just discovered this website and found it interesting to read other people's experiences with alopcia areata.

    Mine started in 1998 when I was 38 shortly after having a miscarriage and D and C. (I now have 2 children) Since then I have permanently had bald patches of varying sizes although due to having very thick hair they have not been noticeable except to those in the know or when it's windy.

    Luckily so far I have not had a patch on my crown, the worst of it being at the top of my neck area and back of the head although now I have a large area going up from my temple. I saw a couple of specialists early on who were not much use and have generally learned to live with it.

    The main thing that has been consistent with me is my low serum ferratin level - iron storage - although I have none of the symptoms associated with anaemia. I was interested to read how many connected their condition with the Mirena coil. I had one fitted in September 2004 and by the end of 2005 my ferratin levels had gone up to 50 and my hair was at its best for years. This I put down to much lighter periods with the coil. After my miscarriage years ago my periods suddenly became very heavy (no reason could be given for this) which I have alway thought must be connected to low iron/ferratin and eventually hair loss. I have taken iron tablets off and on but never really know whether they help or the hair would have grown back anyway. The cycle with hair I believe is so long (about 16 weeks) it's impossible to say what really helps.

    I am now trying something called Florisene which has iron but claims due to having other ingredients as well to be very good at raising ferratin levels. I shall also try sea kelp which I notice a couple of others have mentioned. On another website I read that people had had success with clear/white iodine but my local pharmacist had not heard of it. If the Florisene works I'll write again!

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  • Posted

    Very interested to read of earlier comments on this very helpful and supportive site. I'm 38 and I am too suffering from hair loss within one month of having a Mirena coil fitted - no specific bald patches but losing about 500-700 strands per day. The doctor suggests 'watchful waiting' - but I can't sit here and do nothing. I am currently in the States and the volume of treatments here is mind-boggling. I would favour natural supplements and notice that several products (ie Advecia, Hair Genesis) include the herb Saw Palmetto which is supposed to help for both men and women. Has anyone else heard of or have experience of these supplements for hair loss? The only thing I've done so far is bought a product called Nioxin (shampoo, conditioner and a scalp spray) - it's too early to tell if it will help but no improvement yet - will keep you posted if it does.

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  • Posted

    I was so interested to read all your comments. I had a Mirena coil fitted in November 2005 and by Christmas had experienced hair loss. This has continued. My GP fobbed me off but reading your comments I really feel like getting my IUD removed. But! I notice that some of you have experienced even greater hair loss after removal. I have also gained weight.

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  • Posted

    hi

    interested to read about your alopica and the fact that you had low ferratin levels, i have alopica for just over a year now with three patches in all the worst one being on my crown i to have low ferratin levels but i have found a very good product called nanogen that helps to hid the problem well worth a go

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  • Posted

    Did you mention the mirena coil to your Dr. I also had a iud for 10yrs and have developed alopecia over a year ago. This would answer a lot of my questions.

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  • Posted

    I have just found this site and it has amazed me. I have had alopecia for 11 years on and off and have never thought about the Mirena coil which I also have had fitted but years before I started with the alopecia. I am due to have it removed shortly which will be interesting to see if the condition improves or gets worse as some people have mentioned.

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  • Posted

    [quote=\"M.\"]I'm 30 and since having the Mirena coil removed about 6 months ago I have developed Alopecia areata. I was given a leaflet from my doctor but was told treatment has little or no effect. sad i'm doing my best to ignore the problem but was relieved to read others had the same experience after the Mirena.

    [i:abf4eaf08a]This message was automatically imported from the original Patient Experience[/i:abf4eaf08a][/quote

    i have the coil in almost a year and have just discovered 2 bald patches. i was leaning towards the mirena having something to do with it?? but i still have it in.

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  • Posted

    Hello, I am a 26 year old male and have suffered from Alopecia Areata for 3 years now. It all started when I lost my 1st intermediate family member, about 3 months after my grandmother passed away. I possibly let it get the best of me... dearly missed she still is.

    So After 3 years, I have hair regroth and where I have lost it some of it came back strong and some not so strong, but it seems to be regrowing good, might be white, but its hair.

    I tried the wig solution, but thought I looked to much like Fez from that 70's show... so I returned it... not to mention the company that I baught the wig from stole my CC# and baught some porno sites... thanks btw. I needed the extra stress...

    Well now its time to test out the stress factor, My grandfather is passing away soon, and it is very sad to think about, so I don't... but I figure, with bone cancer thats days away from hitting his brain, I should be very stress and emotionally drawn when it occurs, and I will let you all know if stress might play a part in this... I figure with my body and how long it took when my grandmother died, I will not change treatment * which is nothing* for at least double the time after my breakdown. See if I can relate stress to this disorder...

    People tell me its genetic, it could have been the skin pigment disease, which my cousin does have, or it could be thyroid disease which my sister has, but honestly I don't believe it is genetic, possibly genetic that when a stressful moment does occur that my body is to weak to deal with it and out comes the hair, I will be able to diagnose that more in the near future.

    Back the the UID's and the hormone levels in the body. An imbalance of Testosterone and other chemicals that the body naturally creates or doesn't create in the body on a vulnerable person is what I think triggers the hair loss. I'll admit, I'm a very sexually active man, Married I might add, but I have heard than a normal mans ejaculation contains about 4 chemicals created by various parts of the body, one of them being the prostate, I have read that the prostate can leak some of the chemical known as Prostate-specific antigen (PSA) which are carried threw the blood stream, the only hormone chemical released by sexually active men that has been seen to speed up male pattern baldness, possibly this chemical is what triggers or prolongs the regrowth of the hair. Unfortunately I cannot afford to undergo treatment of this disorder or to even see a doctor regarding the disease. So I am left to decipher this myself. Remember 3 years and its regrowing but still regrowth is thin and white. Although I just read about the PSA's and am not going to change daily routines until I can test the stress factor...

    Now for the other kick in the teeth. I work for a company that requires me to go into strangers homes to deliver appliances. So I am always stressed about my hair loss, not to mention other stresses that are caused from working at a family owned and operated store where I am not part of the family, so to say this nice, I'm constantly crapped on by my boss, and his son, and a few other select employees, you know, the ones with the knee pads. grr I hate favorites. That is the reason I don't think it is linked to stress, unless that might be why the regrowth of the hair is white and taking 3 years to control. I wont mention the other stress causing effects I am encountering on a daily basis, but needless to say, it doesn't seem to have good or bad days, it just seems to be running its course... just not as fast as we all would hope it would.

    If anyone would like to talk about anything, Please shoot me a message on ICQ at ICQ# 3410221 ICQ is an Instant messenger program that is free to download at www.icq.com :P

    I still this Alopecia Areata is linked to an imbalance of chemicals in the blood stream and I do strongly believe it is curable, but no one has found the right method yet.

    By stock in the company that finds th

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    • Posted

      I am very interested in what you believe.  My son has alopecia on and off.  His hair is falling at the moment - my theory is that it is hormonally related as it always seems to correspond to a growth spurt.  So I agree with you that it is definitely something to do with an imbalance of chemicals in the body.  It has always grown back so far.  We have had UV treament (which does work) although I do believe each falling period seems to need to run its course before recovery.  Winter is always worse.  We're hoping that once he is fully grown the hair loss might subside.  Here's hoping.  I also feel that because it is not a life-threatening condition, no-one medical seems to be very bothered about it.  My son always says that I know more than they do!  One consultant hadn't even heard of UV therapy!  I would love to give him something like a supplement, but would not want to make things worse.  Will try B vitamins again - zinc and copper are supposed to be good too.

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