Rapunzel, Rapunzel (My Experience with Alopecia)

Member Name: Whitehorse

Product:	My Experience with Alopecia
Date:	28/06/03 (3454 review reads)
Rating:

Advantages: None whatsoever

Disadvantages: self esteem is battered, identity issues

I mentioned having Alopecia Areata in my A-Z a couple of weeks back but I thought I'd write something a little bit more comprehensive - especially as there's only one other opinion here.

Despite going through the usual things some women experience - sensitive about body image etc. etc. my hair has literally always been my crownng glory. Up to the age of 5 my hair was down to my waist and I loved it. Then one day my Mum announced she was cutting my hair. I was due to go on a weeks holiday with my Gran (to Clacton no less!) and somehow she thought that it would be easier for my Gran to cope with if my hair was short.

I cried. And then I cried some more.

I don't think I ever got over that. My Gran used to tell me stories of a lady she'd known who one day lost all her hair after a shock. I used to think it was an old wives tale. I used to have horrific nightmares about losing my hair. As I grew older I longed to have long hair again. I loved long skirts and hippy tops but it just wasn't done really in my family so I went along with convention - until college that is. Then I let my hair grow and grow. Within a few years my locks were back down to my waist again. I was blessed with a mass of it. People comment on it - perfect strangers in fact. It was something that made me feel good about myself, something that people immediately identified with me.

Then came last year. I had the absolute year from hell. My dog died, my cat died, a noisy neighbour moved in and drove me to the edge of insanity. I broke my toe and couldn't walk properly for a couple of weeks. I was run down, exhausted and in shock at the bereavements in my life.

I noticed my head seemed a little itchy one day - just in one spot. I noticed a few days later that lots of hair seemed to come out when I was washing it but I am used to shedding with the amount I have so didn't really take it on board. Then, one afternoon I was wearing my

hair in plaits and my friend mentioned I had a bald patch that was showing at the back. I thought he just meant a tiny spot. He fiddled around with my hair and then said it was covered.

Later that evening I remembered what he'd said and settled myself in front of a mirror with another mirror to reflect the back of my head. I searched through my hair and suddenly my fingers hit something smooth and shiny. A bald patch around two inches wide. I felt sick. In fact I started losing it altogether. I knew immediately that it wasn't just a tiny bit of hair loss - it was more. In a weird twist of fate I have just written a short script about a women who has all her hair cut off and two days before had had a dream of someone ripping out my hair. I analysed it symbolically. I then knew my body had been trying to communicate with me. At that moment, late at night when everywhere was asleep I felt like some viscious angel had made my worst fear come true. I looked it up on the Internet and discovered Alopecia Areata. No cure. I sobbed for hours and hours.

Next day I went straight to the doctor. Bless him he's a lovely man. I burst into tears as soon as I walked through the door and showed him my bald patch.
"I?ve got AA".
He checked.
"Yes it looks like you have"
I dissolved again. At that point, with that acknowledgement, with all that I had already lost I was seriously on the brink of taking my own life. Without speaking about it I think my Doctor knew. He calmed me, he talked to me, he spent time discussing it all with me. He took blood tests and arranged for a skin scraping just to make sure I hadn't got ringworm which can also cause hairloss - more often in children. When I came out I didn't feel any better about it but I knew that my body was trying to tell me something. My Doc is used to me diagnosing myself before I come in and used to me refusing conventional treatments unless it's abs
olutely necessary. In this case AA is treated by a steroid cream or injection into the bald spot. I said no thankyou.

I came home and began to read everything I could on the condition. My nerves were in pieces. If I heard the thump of music again from next door I was going to jail. Miraculously the council rang to inform me that my neighbours were gone. It seemed ironic that all I had wanted for a year was peace and now I had physical peace but inner turmoil. I began to read everything I could on AA. Within 24 hours I felt like a textbook and my head had exploded into itching and burning. I felt like there were bugs crawling through it. At 4 in the morning I had my head under a freezing tap, mindless of the headache in an effort to just stop the itching. I've never known anything like it. Within 48 hours I had four new bald patches of different sizes and I felt more to come. There was hair everywhere.

Alopecia Areata is considered to be an auto-immune disorder - rather like excema. The immune system turns on itself and begins to attack the hair follicle. The hair follicle retreats from the attack and the shaft of hair falls out. For some like me the shaft first breaks leaving a club ended hair which is typical of the condition. These then fall out leaving the bald patch. Some people mistake them for regrowth. AA manifests as bald patches like I have. For some it can be one patch, for others many. There's no knowing. The hair follicles remain alive and hair can grow back at any time, it can also fall out again. It can also be growing in one patch and falling out at another. Patchy loss is most common on the head but can occur anywhere - for example with guys it can occur on the beard area.

AT (Alopecia Totalis) is where the scalp becomes completely bald.
AU (Alopecia Universalis) is where every hair on the body is lost - everything including nose hairs and eye lashes.

The latter two conditions are less common. Childr
en who st
art with AA MAY progress to AU but to a lesser percentage can occur with adults too. Unfortunately it is a condition that is utterly unpredictable. Those with AU can have spontaneous regrowth like any of the other forms. They can also lose it all again.

There is also a condition called Telogen Effluvium which can occur after deep shock, childbirth or accident. This can be a sudden loss of all hair or major diffuse thinning. Sometimes it's difficult to know whether it is TT or AA as there is a diffuse form of AA as well.

My Doctor said that it's unlikely that it's to do with stress but after the battery of tests came back he agreed that it may well be. I have suffered with anxiety problems for a long time and the past three years have seen them occasionally go through the roof with the death of my Mum, dog and cat. Talking to others with this condition many say that it started after a stressful period in life - in fact it's the majority in those where AA started in adulthood. After doing a great deal of reading I have found studies that show that in deep anxiety the immune system can forget to turn itself off. Rather than having a low immune system it goes into overdrive and attacks the body. Interesting as I hadn't had any form of physical illness for nearly three years - not even a sniffle. Two months after I developed AA I had a massive allergic reaction to a face cream. I looked like I'd been in a car accident. I have now developed excema on my face but manage to keep in under control with Vaseline and not using any other products although I do seem to be able to wear make-up again thanks to the Gods.

There is perhaps a connection with my genes as my Grandmother and her Grandmother both suffered from thyroid problems. I've been tested twice but I'm apparently in the 'normal' range. I think it's possible that AA is a genetic thing that can be triggered by anxiety or illness.


There are
many steroid type treatments for AA as I mentioned before, plus for AU light treatments and other more severe forms of immune suppressant. For some people who choose the conventional treatments they work, for others they stop working when the treatments stop. There's no telling most of the time whether the hair would have grown back anyway.

I have chosen to go the holistic route. I asked to see a homeopath on the NHS and my Doctor immediately referred me. I take Sulphur 3 times a week. Within three weeks of taking it my hair started to grow back. Oh yes and the hair was brilliant white! AA kills off the pigments in the hair but gradually as it grows it returns to it's normal colour. Again the old tales of turning white with shock have some grounding. Personally I wouldn't have cared if it had grown back sky blue pink as long as it grows. Some people trim off the white tips. I left mine as I quite like them. Some people also use such methods as rubbing garlic or onion juice into the patches to stimulate growth. These have worked for some and not for others.

I completely overhauled my diet. I'm a strict vegetarian and already eat a lot of fruit and veggies and drink water by the gallon but I found I was probably not getting enough magnesium and protein. I make sure I eat Brazil nuts and lentils and pulses now. I also take supplements to make sure I am getting everything I need. I meditate daily, try to make sure I get enough sleep although I'm a natural nightbird and I went back to therapy for support.

The itching and sometimes burning is often a precursor to a bald patch. I discovered a fantastic and cheap cure - and I mean cure for me anyway. 2 tablespoons of apple cider vinegar with two drops of lavender oil and to drops of rosemary. This I then soak into my scalp with cotton wool and leave it for an hour or two or less time depending. The itching stopped within a couple of days. There has been a stu
dy done with aromatherapy what includes the oils I've mentioned with very good results. The link to the page is given below. Vinegar is an old way of giving the hair shine. Rosemary also is a well known hair treatment. Lavender is great as a calmer and it just smells nice.

I've noticed a pattern now. If I become stressed, lose sleep or become ill my hair starts falling out again. Earlier this year in 4 weeks I had three colds and flu so my immune system is now extremely sensitive and sunk again but once recovered the patches start growing back. Currently I have two patches that are still 'active' and 4 which I growing back. The blessing in disguise is that my hair is still so long and thick I can easily cover them up. If I'd have had short hair it may well have been more of a problem.

I cannot for a minute say I have accepted this condition. I believe that my body is telling me it's out of balance. After years of anxiety it will take it time to get back to some normality. But it is teaching me that I need to remain calm, to let life flow and not worry about things. I've been more chilled out than I have ever been!

Sometimes I still cry. I try not to think about the future. The idea of losing it all is something I cannot and will not accept or deal with. However the longer times goes on with it being just being AA then the less likely it is it will suddenly become AU.

I don't mind showing people my patches. Sometimes I think of them like warrior marks to show the battles I've been in. I've become more less self-conscious and more conscious of my body and what it needs. These are the good things to come out of it. I do believe that this is not a condition that just happens for no reason. There's some research being done but perhaps more is needed. There is an American organisation but not much here in the UK. One recent study suggested that maybe it is a viral infection rather than auto-i
mmune. Interesting because the immune system is still implicated. It will be a long time I think before anyone really knows if ever.

In the meantime I wash my hair as normal, henna it when I want. I was nervous of doing so at first but people say it doesn't matter a jot - if it's going to fall it's going to fall. I would perhaps not push it by using chemical treatments on my hair but then I'm a natural girl so henna is enough for me.

Medically it's considered a harmless condition but psychologically it can be extremely damaging. If you know someone who develops this condition remember that their hair is a part of them, no different to legs or eyes. I understand a whole lot more now how guys struggle with male pattern baldness. You grieve for losing a part of you. Of course it is something that is visible and affects self image and self-esteem. For women it is harder as there are so many connotations with baldness. I use Zha'an from Farscape as my inspiration - a bald beautiful women. Personally I find both bald men and women attractive but for me it's not an option. I love my hair. I love what it signifies and I'm going to do all I can to keep it, my sanity and my body well.

Note - In reference to the homeopathic remedies if you choose this route please see a qualified consultant as different people require different remedies.

For more information and support try these links


www.keratin.com
For lots of information on hair in general and all types of conditions affecting it

communities.msn.com/AlopeciaAreataSupportCommu nity
A busy AA community

http://www.internethealthlibrary.com/Health-pr oblems/Alopecia-areata-aromather apy-treatment.htm
Aromatherapy study results and recipe

http://npntserver.mcg.edu/html/alopecia/Alopec iaFAQ(part01).html
Alopecia FAQ

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