My Story - 17 years old.

benepv

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Hello all, I am slightly hesitant about posting this but hey ho, here is my story...

My first signs of hair loss started when I was 12 years old. We went to our GP and found out that I had alopecia. I was gutted. A few months later and my head was completely bald and I had lost my eyebrows and eyelashes. Since then, I have gone through all the different types of treatments and nothing has ever worked but I believe that there is still hope. There were small signs of regrowth on my head but nothing too substantial (explained later). I have now just turned 17 years old and I am still completely bald (however, my eyelashes have regrown and my eyebrows have also somewhat regrown). I have lost a lot of confidence in my appearance and my social life isn't exactly thriving. Not a day passes when I don't think how things could have been if I hadn't of lost my hair at such a young age.

I have found that the best way of hiding my hair loss is by wearing a hat but there are places where I can't wear them such as at college as we have to dress formally. I have tried a wig but quickly decided that it just wasn't for me. My friends are all a lot better looking than me and can easily attract girls unlike me but what bothers me the most is that people tend to notice my head and then get put right off without noticing my better features or getting to know my personality. Other than the hair loss, I would consider myself to be quite attractive - tall (6,2"), athletic, muscular but people tend to ignore this and get put right off by the fact that I am bald. I feel as though I have lost my hair at the worst possible time. If it had fallen out a few years later I would look more normal. Still, I try to not let it affect me and try to lead a normal life.

Recently, I have started to notice that there are some patches of regrowth. My previous hair colour was light brown however these patches of hair are actually black which I find quite odd. Although this is a good sign, I am not going to get too optimistic and get my hopes up too high. Also, a lot of people have been asking why my head is bruised which has been bothering me. I shave the black patches of hair everyday using an electric razor however they are still relatively noticeable (as pictured below). I am considering buying some blonde hair dye in hope that the regrowth will be less noticeable. Has anyone got any better suggestions?

Any help or advice in general is much appreciated. Are there any new treatments out there which I may not have tried? It would be good to speak to someone of my own age about how they cope.
 

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diehunnen123

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even if you get some hair back you'd still have to shave it. bro you've been bald the past couple years just stick with it :)
 

shookwun

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A hair piece might be your only option man.
 

Rocknroutlaw

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Tough break man, nature is so cruel to us!
This may not be ideal, but have you considered non-surgical hair graft? it's basically glueing a hair piece to your scalp, with very natural appearance.
Obviously I wouldn't like to have a 'layer' glued to my scalp either, and it would still require some up-keeping.
Anyone had any experience?
 

opti

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Well you dont have male pattern baldness. Your chances of getting hair back are way better then those with male pattern baldness i guess. Even if you said u tried much, there may be options you didnt try. There are always coming up some AA treatments and immuno caused hairloss treatments which probably can get ur hair back
 

M.G

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^^
Yeah, I've read that people with your condition can suddenly grow their hair back since your follicles aren't really dead.

However, if I were you I would consider a hair replacement as mentioned.
 

Swoop

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The good news is that it's possible that you can get your full head of hair back. If this was Androgenetic Alopecia you would be doomed, but this isn't Androgenetic Alopecia.

Seems this is Alopecia Universalis? What did your GP tell you?

Also on what treatments did your GP put you on? He probably has insufficient knowledge about this all.

Have you been put on any immunomodulatory compounds?

Just recently JAK inhibitors have shown big promise for related conditions that apply to you most likely;


http://www.beIgraviacentre.com/wp-content/uploads/2014/06/Arthritis-Drug-Used-to-Treat-Hair-Loss-from-Alopecia-Universalis.png


Doctor+dio+con+remedio+para+la+calvicie.jpg
 

hellouser

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The good news is that it's possible that you can get your full head of hair back. If this was Androgenetic Alopecia you would be doomed, but this isn't Androgenetic Alopecia.

Seems this is Alopecia Universalis? What did your GP tell you?

Also on what treatments did your GP put you on? He probably has insufficient knowledge about this all.

Have you been put on any immunomodulatory compounds?

Just recently JAK inhibitors have shown big promise for related conditions that apply to you most likely;


http://www.beIgraviacentre.com/wp-content/uploads/2014/06/Arthritis-Drug-Used-to-Treat-Hair-Loss-from-Alopecia-Universalis.png


Doctor+dio+con+remedio+para+la+calvicie.jpg

This. A few doses or topical applications every now and then of Tofacitinib and benepv will NEVER have to come back to this forum ever again... unlike us, with Androgenetic Alopecia. Wish I we're able to be so fortunate.
 

benepv

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@Swoop, it's alopecia totalis. My GP put me on minoxidil foam and I had UVA light treatment which didn't seem to do much. I've never use immunomodulatory compounds let alone heard of them.

Thanks for the help so far guys. Anyone know where I would be able to get hold on Tofacitinib?

Also, I have come across DermMatch hair loss concealer and thought that it may be worth a try. There is a video on YouTube of someone applying this to his head and it looks very similar to having
micropigmentation but it's obviously a lot cheaper. Has anyone had any experience with this product? Is it worth a try?
 

Swoop

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@Swoop, it's alopecia totalis. My GP put me on minoxidil foam and I had UVA light treatment which didn't seem to do much. I've never use immunomodulatory compounds let alone heard of them.

Thanks for the help so far guys. Anyone know where I would be able to get hold on Tofacitinib?

Also, I have come across DermMatch hair loss concealer and thought that it may be worth a try. There is a video on YouTube of someone applying this to his head and it looks very similar to having
micropigmentation but it's obviously a lot cheaper. Has anyone had any experience with this product? Is it worth a try?

Are you kidding me? Your GP just took it only as far as minoxidil foam and UVA light treatment? He didn't even think of something else or propose other treatments? Drop that GP immediately dude, holy sh*t. Find a GP that is willing to think and work with you.

Your disease is thought to be auto-immune. So, treatments that have shown most success are immunomodulatory compounds. Here is a study for example that relates to you; https://www.researchgate.net/public..._treatment_of_alopecia_totalis_or_universalis.

As you can see in this study alone quite some patients regrow their hair to great extent, not everyone though;

image.jpg


Now that study is actually done with older pharmaceutical compounds. The problem is however that some of these drugs can have nasty side effects and can even be dangerous (risk-benefit matter). You are still 17 years old so still very young.

These next line of treatments which show great promise are JAK inhibitors like tofacitinib (also immunomodulatory) but I don't think they are approved within the EU.

Anyway stay positive, it's probably fixable.

Dermmatch won't work for you it will look fake as hell. Besides the things mentioned a wig is your only option at least that I can think of, but you mention that you don't like that.

Ohw yeah and SMP indeed but I don't know what you think of that?

Again, you need to get a GP that is willing to work and think with you..
 

benepv

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Ok thanks. Also, does anyone recommend any concealer products which would look natural on me?
 
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