hair

Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....

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Re: hair

Postby meium » Thu Apr 21, 2011 11:19 pm

I had mine analysed at labaratoire garnier's shop in Paris a good few years back (a free thing they did to try and sell you their shampoo) they said exactly the same, that I have thinner hair in terms of diamater (sp) than normal but lots of it, they even gave me a print out of the measurements of my hair, no idea where it's gone though.

Never knew this was to do with any condition, that's really interesting.

As for losing lots of it, that happens to me too, so much that I bought a pet hair turbo hoover just to get it up from the carpet. No pets in my house!
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Re: hair

Postby lovelyfullauren » Thu Apr 21, 2011 11:25 pm

I have a huge amount of curly hair, although it's very soft. I also have the problem with a lot of it falling out - I don't miss it, but it just seems to clog plugholes and the hoover all the time - I have to cut it out of the hoover every once in a while! Even the car headrest and my clothes seem to 'grow' hair as I shed it on them! It really is weird!
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Re: hair

Postby Fiona-Jane » Thu Apr 21, 2011 11:31 pm

loads of my hair falls out too, and used to end up with it all over the house, blocking up the plug holes etc. i now comb my hair with it wet when i condition it and it seems to gather up all my dead hairs onto the comb so i can just pull them off and into the bin. and i've noticed that my hair doesnt tangle half as much as it used to do although i'm not sure if it's the gathering up of the dead hair or just the comb making sure each strand of hair gets some condtioner.... :think: scalps been less irritated and itchy too, always a bonus! :lol:


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Ehlers-Danlos Syndrome (Hypermobile Type) finally diagnosed Feb '08, and a baffling array of other conditions just so my EDS wont get lonely ;^D

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Re: hair

Postby Retro » Fri Apr 22, 2011 1:26 pm

I have quite thick, dark brown hair, completely straight (apart from a cows lick), no amount of gel or whatever will make it do what I/the hairdresser wants it to for more than half an hour. Mine falls out too. I was born with slightly longer than a crew cut! I never need to use conditioner but then I rarely blow dry it and never colour it. I just wash, towel dry, comb and leave because there's no point in doing anything else.

Lindsey
...all the knowledge in the world is of no use to fools... ~ Long Road Out of Eden ~ Don Henley, Glenn Frey, Timothy B. Schmit (The Eagles)

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Diagnosed with CFS/ME October 2005
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Re: hair

Postby nemonie » Fri Apr 22, 2011 2:14 pm

My hairdresser (when I used to be to afford to go to one :cry: ) said I had loads of hair but it was really fine and silky. She was also amazed that I never got split ends even when it was nearly butt length :lol:

When I used to dye my hair - with permanent dye - because my hair was so long and had so many layers of dye on, you could actually see the difference between the width near my scalp and width at the ends. Oddly enough now I'm getting random grey (well white) hairs these are much thicker than my dark brown hairs. Speaking of, did anyone else start to go grey young? I'm 30 now and my first few greys appeared around the age of 27, fortunately they are still pretty randomly dispersed.
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Re: hair

Postby sheppeyescapee » Sat Apr 23, 2011 1:36 am

I've been getting grey/white hairs since I turned 14! :shock: Must have been all the stress :lol:
J - 28,student,married to the lovely Em and live with 2 cats Bilbo and Pippin. Diagnosed with Aspergers, Dyspraxia, Dyslexia, EDS-HM, Mild Asthma, Chronic Pain, Chronic Fatigue, POTS, Syncope
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Re: hair

Postby Spireite » Sat Apr 23, 2011 10:30 am

I started getting white hairs when I was around 20, which is a long time ago. I still keep pulling them out when I see them. One of the problems with a trip to the hairdressers is that the white hairs show up more when the brown ones have been chopped!
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Re: hair

Postby meium » Sun Apr 24, 2011 1:25 pm

I dye mine to get rid of them, been getting them for a few years or so.
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Re: hair

Postby Crystal » Sun May 01, 2011 10:21 am

I never considered my hair to be another indicator. My hair is "thick" ie I have a lot of it, but the individual strands are really fine. I have a real problem with static, my hair just goes really fluffy and holds a static charge too well.

I also seem to lose a lot of hair, sometimes I wonder where it all comes from. If I didn't have so much of it I'm sure I would have gone bald before now. I'm only 23 and I've been finding "silver" hairs for years, usually near the front of my head but so well spaced out I can easily hide it.
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Re: hair

Postby Jill » Mon May 02, 2011 1:51 am

Has anyone been diagnosed with androgenetic alopecia? With it the follicles become sensitive to hormones. Within the follicles are androgen receptors. These androgens send messages to the follicles to produce less hair. Consequently, growing cycles are shortened while hair becomes thinner and finer.
The only solution is to use topical medications during all future life without long breaks. I can't stop thinking about the amount of money I'll spend on it :wink2:
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Re: hair

Postby lil_miffy » Fri May 06, 2011 5:51 am

My hair is falling out in the handfuls at the moment. I mean I'm loosing loads. When I wash my hair i loose so much that it clogs the plug every time, when I brush my hair i end up with handfuls and theres loads on my pillow every morning and on my clothes at the end of the day.
I think it might be to do with my stomach problems and that im maybe not absorbign something i need which is making my hair fall out.

Im very worried becuase a few years ago I lost so much of my hair that I had to have my head shaved becuase I had huge complete bald patches and the rest was so thing I looked really ill.
Its taken me a long time since then to get my hair growing again and looking nice and curly again so Im devastated that its getting really thin again.

I put it down to medication last time (lithium) but as im not on that and not taking any meds that cause hair loss now I'm wondering if the last time was actually to do with my eds or something.
I'm not stressed so its not that.

Any ideas?
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Re: hair

Postby Jill » Fri May 06, 2011 7:30 pm

You could visit trichilogist about this. It can be reaction to medication, stress, iron deficiency, hormones or genetic issue. The bright side - it is much easier to stop hair falling when you are a woman. I was told that I lack iron and my genes are not hair friendly (surprise!)
Here's an article describing different causes of hair loss http://www.aafp.org/afp/2003/0301/p1007.html
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Re: hair

Postby meggy.nut » Fri May 06, 2011 11:06 pm

My hair is superfine, but if I bother to style it it poofs out over two inches out from my head all the way down to my shoulders in soft curls. But if its not styled then the ponytail is probably less than an inch in diameter. I don't usually bother to style it as I can never get it do what I want; easier just to let it air dry after (maybe) putting gel in it. Plus holding the hair dryer presents another set of issues.
When I was little my mom dyed my hair black for my Snow White Halloween costume..It was supposed to be temporary but I had black hair for at least 2-3 months after that.
I also loose hair but never seem to miss it - my husband has said (and I agree) that I shed nearly as much as our dogs. :oops:
My mom has suggested it might be thyroid related but the tests are always normal. It is definitely interesting how many things are related to EDS.
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Re: hair

Postby Stone » Mon May 09, 2011 3:05 pm

My hair is very fine too. I had long dreads braided in at uni and the ones at the very back came out just by pulling on the end, no matter how hard they were braided in...(I shaved that bit off in the end, problem solved :lol:)

Now I try to keep my hair short and low-maintenance - had it cut today actually, the longest bits are about 10mm. I have very curly hair so it knots itself into a huge unruly bush shape - it flops into itself on top so it looks like the top's not getting any longer but the sides keep coming out, it gets wider and wider!

I stumbled upon the magic way to make it manageable because I'm a bloke, and a lazy one :lol: The secret is not to wash it anywhere near as often as girls are prone to. I wash mine with shampoo no more often than once a month and sometimes two, but just rinse it through in the shower every day. You have to stick with it for a few months as your hair will look terrible while it adjusts, but once your scalp is retrained it stops producing anywhere near the same amount of grease, so when you get it wet the dirt slides off. Really hair is supposed to be self-cleaning, so by stripping off the natural oils every time you wash it (I bet some of you lot wash it every day!) your scalp just frantically tries to produce more oil, you keep washing it off and eventually you're trapped in a cycle of washing it way more often than you need to. As an added bonus you get no split ends and no broken hair, ever :D This works at least up to shoulder-length but I've never been able to convince anyone with longer hair to give it a go :lol:

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Re: hair

Postby Rosie » Mon May 09, 2011 3:53 pm

Hi all

Stone, I have seen this on telly, a few years ago. There was a girl who had not washed her ahir for several months, she had waist length hair and it was in beatuful condition. However, I have never managed to try it for myself, I have settled with having short hair for now.

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