Alopecia

Thumpette

Hey Guys,

I got a bit of a nasty suprise yesterday when i was messing with my hair and noticed a fairly large bald patch at the base of my neck. I got an even worse supply when a bit of futher investigation and a comment from an oh so sensitive collegue alerted me to the fact that I had a second patch near the crown of my head- and suggested it might be ringworm!

Anyhow i was familiar with what it actually was as my mum has gotten these patches for years, and I have since discovered that my Dad and my Auntie also get them- it sounds fairly conclusive that it is alopecia. I was quite upset about it yesterday, particularly in wondering how many people had noticed/ been talking about it etc, however with the insight of a good night's sleep on it I see now it's only hair and it doesnt really matter that much.

I am still quite worried about what will happen next though, as I can cover the gaps at the moment but I am a bit concerned i will get more patches and even possibly go totally bald! Based on the level of it my folks have that seems unlikely- but still a worrying possibility. I know loads of people have much more serious things to contend with, and it happens so be it, I will deal with it.

I was wondering if anyone has experience with this, how it progressed, how long, if at all it took to grow back, what helped and hindered it (in a non medical advise way of course) I know my mum uses very dilute Jeyes fluid to kill the itch sometimes, however I'm not sure i fancy that! I dont have much of an itch, more a slight tingle- and the spots are (so far) around the size of a 2 euro coin.

I havent gone to the doctor- from what I read there isnt much they can do anyway. Would anyone suggest it's worth going, or will it just be confirming what I already pretty much know for 50 quid i could be using on stocking up on hats? :P

Looking forward to hearing your thoughts/ experiences.

echosound

All I'd like to say to you is a) you have a great attitude, that is half the battle! and b) it will be easier to deal with seeing as (I presume from your name) you are female.

A close male relative of mine has this, and what he found was the most irritating aspect was he lost his eyebrows/eyelashes and patches of hair on his arms, which were noticeable. His head - not so worried about as he just kept it shaved short.

For a woman, you can work wonders (if it progresses to your eyebrows etc) with makeup etc, whereas my relative couldn't bring himself to "draw" eyebrows on in case his friends started making fun of his "make-up". Also, as a female, you wouldn't have that much hair on your arms etc that would be noticeable if it started going patchy. Hair on your head can be easily arranged in a style that will cover the patches well enough.

Having said that, apologies if you are actually male! If you are, grow your hair out a bit on your head so that it can partially cover the patches with a little styling, or go the other way and whip it all off.

My relative spent about 3 years with noticeable patches, and then the hair started growing back in by itself - now while he still has a few patches, they are not noticeable at all anymore, and his eyebrows have also come back in. The only issue is that the hair that has regrown is finer - more downy - than the rest of his hair, and it also lost a lot of pigmentation (but doesn't matter to him as he's older and turning grey anyway, would be a different story if you have jet black hair, then, I'd suggest going to a reputable hairstylist and seeing if they can do anything dye-wise for you).

The only advice I can give is the run of the mill type stuff - careful when out in the sun, make sure you're well protected, especially on patches on your head. Use gentle shampoos etc so you're not irritating your scalp.

Rather than go to a doctor if you feel they won't be able to do anything, would you consider going to a pharmacy and asking them what they'd suggest? Perhaps something as simple as a generic moisturiser would help, I know emulsifying ointment is good for eczema, to combat the dryness and slight itch.

I also hear that a supplement like a B vitamin complex is good for skin/hair/nails, so perhaps try that to see if it improves anything for you?Naturally, do a bit of research yourself on this first to see if it's something you could go for, and to make sure that you are not on any medication that it would interefere with.

The final thing I would say to you is that it seems to flare up (in my relative) in times of stress, so try to not allow yourself get overly stressed if possible.

Best of luck!

Thumpette

Yip I am a girl, appreciate your comments however I'm not sure I'd agree thats a better situation to be in than a guy. Men can wear long sleeves etc to cover patchy arm hair, and shave their heads, however baldness is almost accepted as a part of life for a fair proportion of men. I'm not for a second saying it is easy, however depending on where the patches are covering that up could be a lot more difficult. Also, so much of a girl's femininity and self esteem is tied up in their hair, silly and all as it might be, I never realized how true this was.

You're certainly right that stress has a part, Ive been learning to drive lately and i think that might have kicked it off- deffo gonna try to relax a bit more.

Thanks for your feedback anyway.

girliegirl

I dont have this, but a very close friend of mine has suffered from it for years, it seemed to start when he was in school around exam time. Ive heard it can be worse in times of stress. Anyway his hair was patchy for years and one day he was just sick of trying to hide it (which was impossible really) and trying to get it back.

So what did he do? he embraced it and shaved his head. And I can assure you he has never looked better. He has more confidence now, as he says he is no longer "hiding" anything. It's there for everyone to see before they even speak to him.

I know this doesnt affect you at this stage, and if you only have a few patches so dont shave your head straight away as your patches may fill in. I'm just saying what happened so you know that if "worst comes to the worst", it's not actually that bad having a bald head! It's uniqueness! (sp)

Sorry just saw you're a girl, so not sure if my post helps at all...

Thumpette

girliegirl wrote: »

Sorry just saw you're a girl, so not sure if my post helps at all...

Hehe, it would certainly be more unique if I did this as a girl, I'd prefer not to go down that road though!

DenMan

Hi OP

It may well be a temporary thing. You did say you were worrying about the driving test coming up. Your hair might have got 'frightened'. I know it sounds stupid but that is a term they use in the US. When exposed to stressful situations the hair follicles fall out at the root. This causes patches to develop. When your stress levels fall back again the roots re-grow. It is a genetic trait that develops, and believe it or not actually protects the rest of your hair by temporarily shutting down some of your roots. Hope it comes back.

dolphinius

Alopecia is one of those ailments that sound a bit silly to others but they're not.
My ex gf had it for 2-3 years. 20c coin size on the crown of her head and a bit of a gap at the top of the neck.
She blamed it on a pigeon crapping on her, one day. It caused confidence issues.
If she was a bit down and we went out to the pub, she would feel uneasy, thinking people were staring at the bald patch.
Nope. She was a pretty girl and they were just checking her out, as they do.

Some days that 20c coin got so big and heavy in her head she'd cry.
So, remember, other people won't see it, and if they do, it's a small talking point but no big deal, for them.
Keep perspective is what I'm trying to say here.

Alopecia is still not understood very much. It seems to run in families. Stress seems to affect it. Diet and lifestyle too.
One thing they all seem to agree on is that it is to do with the bodies immune system.
This goes for male baldness too, which I know a lot about.

Somehow the immune system sees some hair follicles as 'enemies' and attacks them.
So, the bird crap might have been to blame. Perhaps you are mildly allergic to a shampoo, or a detergent, or a conditioner,
or even one of the many food additives we consume every day. Which one, right ?

Some internet sites recommend different vitamins to boost the immune system. That's up to you.
A simpler method is to just massage your head gently. This stimulates blood flow and hair growth.
One great idea I read had to do with nettles. It suggested that you wear a bracelet made from nettles.
The mild poison in the nettles would attract the immune cells to the wrist and they would leave the hair on your head alone !!!

So, home cooked food, lots of veg. Chemical free shampoo and conditioner. Head massages. Keep perspective. Avoid pigeons, nettles and hats.

W0LFMAN

Hi OP,

I’ve had alopecia for the last two years, My Hair loss Started off in my beard, the bald spot was very smooth and slowly spread over like spots of 2 euros over my body.

After awhile the 2 euro spots connect together leaving a large bald area, this loss process continued for a year… some people lose all there hair in two weeks…(Gail Porter).

Some take a lot longer. After a year of loss I started to have some regrowth.

People think women suffer more than men, but in honesty it’s the person with the lower self respect in themselves that will hurt the most.

In my worst hair loss point I had lost a good 70% off all my hair everywhere… My head hair kept strong and remained the most (worst point was 40% loss).

The Last Year I’ve had a lot of regrowth…. In fact the only bit missing is 70% eyebrows and 35% eyelashes. Everything else is back to normal.

I wouldn’t bother with a doctor, the one I went too tried looking up the cure on the net.. he turned around and told me there wasn’t one…Which I knew as I did a lot of research, well you would when its happening to you.

The best source of information is the alopecia UK forum, but be careful when alopecians are low they normally vent in forum.. and this can bring you down too…

There are a million things this symptom will put you though in this moment of your life, learning to see, deal, understand the real meaning of you, will stop you from feeling alone.

It’s a damn horrible thing to go though, you will feel no physical pain. The pain you receive will only come from other people. How they look at you, how the talk to you, how they act around you.

Being an alopecian has opened up my life experience, in what it’s like to be different, to think different, to feel different. Now that I’m 99% cured and soon fully, I will continue my trip in life among everyone else that’s normal.

As a person It’s changed me, I have a feeling and understanding experience in not to judge people that have any symptom/handicap/disability/race/age/sex with any sort of disrespect, people do hurt, and sometimes just by the way you look at them.

I know what it's like to feel hurt.

In the beginning of post I said, “understanding yourself”, its the most important thing I can tell you… the pain from alopecia will come from within, learning to deal with it must be fought from within, fighting the world will not kill the root of where the pain will stem from….you might not understand this, and hopefully you won’t have too, this way of thinking was the only thing that kept my head up sometimes, and boy did it get so low.

Alopecia, it can come and go in a whisper, but leave behind something some people may search for in a lifetime.


regards

Wolf

Fuascailt

I've had alopecia since september last year. I've one patch behind my ear and one at the base of my neck. I had a patch at the top of my head that has since grown back. As people have said, no one knows what causes it, no one knows what to do for it. My advice would be not to worry. I know I spent weeks freaking out, worrying that it was going to get worse. But in the end, worrying isnt going to help.

Also, its actually more common than you'd think. My doctor, a small rural practise, said he'd see 3-5 cases a year.

Nevyn

Thumpette do you dye your hair at all ?

Faith

A very close female relative of mine has alopecia universalis. It started with the hair on her head falling out in 2001 and soon after, all the hair on her body was gone. It happened during a very stressful time but hasn't grown back at all yet. Granted, since then she's battled cancer and is a very determined woman who's always undertaking new challenges and pushing herself, so maybe she hasn't relaxed enough yet.

She had patches when she was in her 30's and then lost it all in her 50's. She simply went out, got a few wigs that resembled her own hair and got on with it. I'm sure it gets her down occasionally but she never shows it. Like you said, it is only hair (although I know that I'd be devastated if mine fell out). Confide in your friends and family so you're not trying to hide it.

It is an autoimmune disease, much like thyroid diseases. There's nothing that can be done about it yet but it's the focus of a lot of studies right now. There has been some promising results thus far.

OP, I wish you the best with this. I really hope that it doesn't progress beyond patches, but in the mean time, learn some hairstyles that cover the patches. If you need to talk any more about it, you can PM me.

LegacyUser

Hi OP
Thanks for posting. I can completely understand where you are coming from. I'm a female..and my hairloss began when I was 19. I'm now 30. So i've had a long time to adjust to it but its a daily struggle. Some days are great and others are tough.

Its just hair right? But its something that can crush you when you begin to lose it.

As a girl, hair is not just something that grows out of your head. Its a part of who you are. Its a reflection of yourself. Having a bad hair day sums it up.

When your hair isn't quite what it should be it can affect you completely and wholely as a person. How you function, how you interact with your peers and also how your peers see you.

I've been to doctors...and got the same response from each one. "Its just one of those things...deal with it". Now I'm not naive. I understand there's no cure. But when a 21 year old girl is close to tears in her doctors office, gettin the advice to deal with it is irresponsible and downright wrong IMO.

Anyway I've learnt how to deal with it. I disguise it pretty well. (I've lost 60% of my hair on my head). Haven't noticed much other hair loss...I'd love to not have to bother shaving my legs...but no, thats still there!

Anyway just wanted to say you're definitely not alone. And its something that will shape and change you as a person...and hopefully for the better. You become stronger. You can get through it.

Thanks for sharing your story.
Keep well.

Davexirl

I had it a few years ago, patch at the side of my head everyone noticed it. I thought I was going bald anyway it cleared up itself. I went to the doctor and he prescribed this cream for it. I can't remember the name. But a year later it came back with two patches this time at the back of my head. They cleared up in time by using the same cream and it hasn't come back since thank god. Don't worry it will clear up

Thumpette

Hi Everyone, thanks for all the responces Its great to hear some other experiences. I guess at this stage I'm still hoping mine wont become a major issue for me, as my patches so far as easy enough to hide and one of them has even started to get some downey hair on it. It seems so silly to even think twice about something that seems so shallow, but hair is an important part of your identity and confidence. I dont know if Im allowed to mention brands on here so sorry if i shouldnt but i was talking to my mum earlier and she mentioned the herbal essence fruit fusions seems to particulrly badly affect hers, which was a strange co-incidence as ive been using that for the first time in ages over the past couple of weeks. I'm sure its just co-incidence, but an interesting one i thought!

In responce to the question about whether i dye my hair, the answer is that yes i do, but not that often. Im fairly 'nice' to my hair. I rarely if ever blow dry, straighten it etc- certainly in comparison to your average 25 year olf girl! I will be treating it even more gently now obviously to try to minimise this as much as possible. i bought some really gentle (and really expensive) shampoo which apparantly doesnt have soap in it- and ill certainly try to eat well, stress little etc.

I will keep this thread updated at intervals if anyone is interested in how this progresses. Thanks again for the replies!

Kazobel

To the OP I just want to say well done, you've such a brilliant attidude to this that you should be commended. I've had Alopecia most of my life and can understand how you're feeling right now, everybody say's "It's not the end of the world" etc but all you want to do is tell them to fcuk off because the reality is if it was happening to them they wouldn't be so glib about it but what you have to remember is it isn't happening to them, it's happening to you and as illness's go Alopicia sucks. You're not sick as such because there's no risk of you dying, they see you lose your hair but they don't know what to say because they feel like anything they do say is only pity and will change nothing so instead they'll encourage and joke, love them for that because Alopecia is one of those things that your friends and family will feel they can't fight. If it was Cancer then they'd all have a name for the enemy and band together behind you to beat it but Alopecia isn't a physical desease it's a cosmetic desease so there's nothing they can do and other than giving you support will generally feel useless.

As I said I've had it most of my life, I don't remember not having it in some form or another, the worst time for me was when I was 26, I lost my son and in the space of a month all my hair, everywhere, went colourless and died. I'd wake up in a bed lined with hair with no pigment, eyebrows, eyelashes even pubic hair I had nothing left by the end of that month and to answer you're grow back question mine didn't until I was 32. At that point I had destressed. If you have it now you'll always have it and no medication works, I found out I have a high immune system and thats what started it but now if I get stressed I expect my hair to fall out...so it does...I do it to myself so I stopped obsessing about things. You'll feel it, it's like an itch in your head but you can't scratch it? WHEN YOU FEEL THAT TAKE A TIME OUT AND DISTRACT YOURSELF (I draw or play video games, anything to distract me)

Advice (Non medical):

Go to Holland and Barret, buy 3 things:

Sea Kelp tablets: It seem we all have a problem with our Thyroid gland, we stop producing iodine (get checked if you want) and sea kelp gives us that back.

Silica tablets: The main ingredient in hair or nails is keratin, people with alopecia have very little, it's starting now with your hair but don't let it get worse, my nails fell out too and I spent two years with bandaged hands because all my fingers did was bleed, silica is keratin, it tastes like sh!t and is like eating gravel but you have nails and trust me you don't want the alternative.

Flaxseed oil tablets: It conditions your hair, the hair that doesn't fall out will feel great because of it and it slows it down.

Other than that all I can say is good luck, there's places to post like here where you won't be judged, we all get that "why me" anger, take care

DenMan

I remember reading about the terrific properties of sea kelp. All of the best nutrients the body needs comes from the sea, then again life did evolve there before animals left the sea to come on land. Off topic I know but all that pre-history and evolution of life really fascinates me.

Splendour

Kazobel wrote: »

Sea Kelp tablets: It seem we all have a problem with our Thyroid gland, we stop producing iodine (get checked if you want) and sea kelp gives us that back.

I would DEFINITELY second having your thyroid checked, hair loss is a big indicator of sluggish thyroid.

Kazobel

Splendour wrote: »

I would DEFINITELY second having your thyroid checked, hair loss is a big indicator of sluggish thyroid.

This is true OP, everyone with Alopicia, EVERYONE,has thyroid problems, you can also try getting the steriod injections into your scalp but jesus christ they really hurt, I did it for a year and honestly cried so much, it burns in a way I could never describe and at the end of it they didn't help at all, sure even when I was trying I was told that if anything they'd only be a temporary fix and as soon as I stopped the hair would fall out again, that was my worst year out of the lot of it, they'd strap me down on my belly and use impact injections on my head and it burned so bad but I couldn't move to scratch it, I'd spend 4 or 5 hours strapped down crying and feeling like my head was on fire. Try it if you want but it'll leave you really upset and it rarely works.

Thumpette

I didnt actually see the rest of the replies to this one till I just went to have a look for it now. I havent lost anymore hair since, and one of the patches is beginning to grow back a little- feels furry!

Thanks for all your replies, I will definately look into the Thyroid thing- I didnt realize there was a link, but as you mention it my mum (also with alopecia) has also had serious thyroid problems- o definately worth a check out!

MJOR

Good luck with that x

Dalfiatach

Thumpette wrote: »

Hehe, it would certainly be more unique if I did this as a girl, I'd prefer not to go down that road though!

Two female friends of mine got alopecia (not at the same time, obviously). One shaved her head - no, really - and she looked so damn hot and got so much attention from the boys that years later she still keeps it shaved. True. The other just wore lots of hats, scarves, bandanas etc for a few years till the alopecia calmed down and her hair grew back. That works too, there's a unique Roaring 20s/Gypsy clothing style she perfected which looked great, very sexy and just different enough from the usual to pique interest without looking like a nutjob. A fine line yeah, but it is do-able