I'm 25 years old, and I have cicatricial alopecia

Hi everyone,

I've has psoriasis on my scalp since i was about 11 years old. It's pretty severe, and only ever seems to go away when i'm pregnant (I have 2 kids). It doesn't matter what I take or what I do, it simply will NOT go away.

2 weeks ago I was diagnosed with endometriosis, which was pretty shattering, and I'm in pain quite a lot. Then, a week later, the hair on my head starting coming out in clumps and my hairline at the front as thinned out in quite a dramatic way. So I went to see the doctor, and they said I have "cicatricial alopecia". My hair is basicaly breaking off and falling out. I have a really supportive husband and family. Luckily I shouldn't loose my hair anywhere but my head, but doc said it's a possibility. I have short hair (as a concave style) which doesn't look that great now that it's thinning in some places.

I really am unsure about whether to just cut it shorter or not, and I really want to feel confident about wearing a wig, but I'm petrified about judgement etc. I love wigs and hair extensions, but not as a everday thing (i'm sure i will get used to it though). I just wish I had the confidence that a lot of you other people on here seem to have.

Just wondering if anyone can relate, and those of you who have "gone the wig", just wondering what sort are the go? and which ones are best?

Appreciate any replies :)

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Permalink Reply by Dee on August 3, 2011 at 6:08am
or no replies... lol :D
Permalink Reply by PaulJ on August 3, 2011 at 6:38am
What about "sort of" replies :)

Welcome to the site ! It seems to have been quiet today on the site, hopefully you'll get some answers\replies tonight\tomorrow.
Permalink Reply by VanillaPlum01 on August 3, 2011 at 6:54pm
I actually had hair only on the top and from of my scalp before I decided to shave it off.... is that not a thought? Yes it was difficult but you always have to try and look on the bright side. I have had two types of wigs and both were pretty expensive. One was like a suction and the other is a full lace. With the full lace you can still see your scalp (more so than with the suction for me at least), and it seems to be more durable. It was very difficult shaving my head, but once I did, I realized more so that beauty is only skin deep. We can't expect the world to understand us but we can expect them to respect us the way they would respect anyone else... Question : Is it possible for the doctor to give you hormones similar to the ones that your body produces during pregnancy ?
Permalink Reply by Dee on August 3, 2011 at 7:23pm
Hey Everyone :)

I just wanted to thank everyone for all of your kind words and advice, I really appreciate it :) I only joined this site yesterday, and to you especially VanillaPlumo1, you were right! the other peoples testimonies and stories on this site has really helped boost my confidence! I am going to ask my doctor about hormones similar to pregnancy ones (wonder if that is available???) a very interesting question to ask though! I'm all about natural alternative therapies, and my very best to avoid any drugs etc that doctors recommend. I want to exhaust every possible natural way of dealing with this before i resort (if i do at all) to doctors drugs etc.
My family and my husband have all suggested just shaving my head and treating my skin and taking it from there. I guess because they are soooo supportive about it, i'm actually really starting to think about that option. My Mum suggested hosting a pink ladies party (wigs, hair peices, turbans, scarves etc) and you invite all your ladyfriends around and buy some lovely products. My Mum said this will be not only a lovely event to have, but will also be an ice breaker way of telling my friends what's going on with me. I think that's a great idea! Obviously a lot of my mind set shifted since I posted this question yesterday! hahahaha amazing what family support can do :)
Thank you again for all of your replies.... and Tan B, you are right, screw people hahahaha :D as long as my Husband doesn't mind.... I think i'm ok with it all lol :) and thank you Vanillaplumo1 for your suggestions on wigs etc :)

I will def add crowned Regal also, thank you :) xx
Permalink Reply by VanillaPlum01 on August 3, 2011 at 9:09pm
You are very welcome! I am thinking perhaps more estrogen? IDK I'm not a doctor but I assume during pregnancy your body produces more estrogen. Just a thought, I couldnt think of the word before:) Glad to see you are feeling better.
Permalink Reply by Tallgirl on August 3, 2011 at 8:26pm
Click on Discussions for Wigs section and Shaving section, and follow all the discussions. There is a lot of advice already on this site, including synthetic wigs!
Permalink Reply by Carol Sue Cain on August 4, 2011 at 1:49am
Hello! I too have cicatricial alopecia (scarring). I was diagnosed a year ago. I cut my hair short to ease the transition. I think it hides the thinning better. I also just went blond (I'm a greying brunet) and that really helps hide the thinning because I'm pale and the transition between light hair against my pale scalp is much less noticeable.
My dermatologist happens to specialize in cicatricial alopecia. She says it's not "technically" an autoimmune issue. Apparently the inflammation of the hair follicles (which causes the scarring and hair loss) is due to the sebaceous glands producing oil that is not normal...our bodies respond to the not-normal oil so it actually is a "normal" immune response. (Autoimmune is where your body attacks normal/healthy tissues). Why do the follicles start producing non-normal oil? Nobody knows. She has found that the oils are somehow linked to non-normal lipids. Here's the weird thing. She has found that ACTOS (a diabetic drug that involves the "lipid pathway") seems to help stop the inflammation. I've been on ACTOS for 9 months with significant improvement. Strange. My sadness with alopecia is that the scarring can permanently prevent new hair growth....THOUGH my eyebrows have responded to cortisone shots and have 1/2 way come back....when I ask why, she says "We don't know". That seems to be the watch-word for Alopecia "We don't know".
Peace, Hugs, when it comes down to it we all have to be comfortable in our own skins, hair or no. cs
Permalink Reply by Carol Sue Cain on August 4, 2011 at 1:51am
ps....I was diagnosed Gluten Sensitive/Intolerant 2 years ago....I think everything is immune related.
Permalink Reply by Dee on August 4, 2011 at 2:50am
Hi Carol,
Thank you for such an interesting reply! I have heard a lot of "I don't know why" with my psoriaisis alone! and now I'm hearing a lot of "we can't say, everyone is different" with alopecia.
I'm currently on a gluten free and dairy free diet, which for some "unknown" reason, helps with psoriasis, in some people (but not all).
I have a pretty crappy immune system, I have had the chicken pox 6 times!! I don't build up an immunity to ANYTHING, and am always sick (yay) .
I believe everything is Diet related.
I'm reading a great book at the moment by Gillian McKeith called "Gillian McKeith's Food Bible" I highly recommend it :) It might not help everyone, but it might help someone :) personally, the part on ecezema is really helping my daughter :)

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