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reney
New Member
Posts: 4
Joined: Sun Oct 03, 2004 12:07 am
Hair Loss Type: Don't Know
Have you had a hair transplant?: No

newcomer here

Post by reney » Sun Oct 03, 2004 12:22 am

Hi everyone.

First time user here. I had this site in my Favourites but only noticed it today.

I've suffered from Alopecia Universalis for near 20 years now. With all the research and the testimonies I've read over time (and it hasn't been that many), I feel bombarded with what's out there. I haven't really researched a whole lot.

But I'm 21 years old now and a female... and to be endowed with this condition throughout my teenaged years and now coming into my twenties, I am feeling the implications of my hair loss. The implications meaning that feeling of wishing I had my hair. Throughout my childhood, I've been okay in dealing with it and I still am but perhaps, I'm a little more weary now because I didn't expect to be going through this at this age. I figured by the time I finished high school, I'd have all my hair back. It's a hopeful wish.

I'm more interested now, however, to do something about it. I never wore a wig nor did I go in for treatment. I've been told it's a disease and I've been told it's a disorder. I've been told it's auto-immune and I've told it's dermatology. I can't keep up.

Since the age of about 11 years (which is now ten years ago), I have had hair growth on my head and a very little bit on my eyebrows and eyelashes. However, the growth has come and it has gone and it has come and it has gone. I don't like it at all. My head looks patchy and at one time during my growth period, I had a near full set of hair (not long, but nearly covered) except for a few bald patches. Now, I have more bald patches with scarce strands of hair here and there.

I just don't know where to start in trying to do something about this. I don't want to undergo some kind of treatment whereby which I may have serious side effects that WILL cause me harm. Hair loss doesn't harm me health-wise. Wearing a wig or getting a hair transplant are last options which I'm not too comfortable with because I prefer naturalness and if I were to have a full set of hair, I'd rather it be my own.

So I'm asking any one out there to please help me. Direct me somewhere. I don't know where to go, where to start, who to ask. I'm weary about talking to my GP because I know he isn't specialized in alopecia. I want to get information from worthy and reputable sources. I want to know that if it's been this long, if there is any chance for it to work. I want to know why some hair now and more hair before and no hair before that. I've read a bit (in respect to how much is out there) but no where nearly as much as I probably should.

I have school and work and the rest of my life to go on with so I haven't been, in the last 20 years, able to sit down and learn more about what's going on.

I hope someone can help me.

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HairLossFight.com
Site Admin
Posts: 1218
Joined: Sun Aug 24, 2003 3:24 am
Hair Loss Type: Androgenetic Alopecia (Male Pattern Baldness)
Norwood Level: Norwood III Vertex
Have you had a hair transplant?: Yes

Post by HairLossFight.com » Sun Oct 03, 2004 10:49 am

Hello Reney and welcome,

Thank you for sharing your heart-rending story with us. I truly feel for you and hope that your situation improves.

I live in Vancouver, BC, Canada where a number of top dermatologists whose focus is hair loss and hair-related diseases practice. One in particular by the name of Dr. Jerry Shapiro is excellent and works with many Areata and Universalis patients. I think this is their number: 604-875-4747. Let me know if they will let you have a long-distance appointment with him. If not I will talk to him directly to try to get you one.

Here is a link to his site that shows an experiment he did showing the treatment of someone on one side of the head with DPCP. Quite successful.

http://dermweb.com/skincare/hair/dpcp.html

Best Wishes,
Sam

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Tricia
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Posts: 325
Joined: Thu Jun 03, 2004 5:19 am
Hair Loss Type: Don't Know
Have you had a hair transplant?: No

Post by Tricia » Sun Oct 03, 2004 11:21 am

Hi Reney,

You might want to check out the following website. It's for women.

http://www.heralopecia.com

I'm a female with AGA. I know on the heralopecia site there are women there with alopecia areata and totalis.

Women there are trying treatments or using a variety of cosmetic hair replacement options depending on their situation.

As far as wigs go, some of them can be incredible. If my hair loss gets bad enough, I'd shave my head and get a vacuum wig. They can be gorgeous. Check out http://www.peggyknight.com

Please try not to be discouraged. Hair loss is devastating for women, but our cosmetic options look more realistic (just my opinion). I'm sure you could find a solution and get your life back. ((HUGS)).

Hope to see you on heralopecia.com

Tricia

reney
New Member
Posts: 4
Joined: Sun Oct 03, 2004 12:07 am
Hair Loss Type: Don't Know
Have you had a hair transplant?: No

Post by reney » Sun Oct 03, 2004 12:48 pm

oh my!

Thank you so much for your welcomes and suggestions and advice.

Morphollica, I live in Vancouver, BC myself so I will definately get in touch with this guy. Thank you so much. I will check out the link you provided as well!

tricia, it's so nice to have a woman out there for some sympathy. I don't know what AGA is though. But I will check out the site too. My reasons for not wanting to venture toward cosmetic options is because of my feeling of naturalness. That's not to say I think that the hair made from wigs is fake but that the hair is not my own, is what I'm not a hundred percent comfortable. But thank you for the links. I do appreciate it.

I also have one other person that PMed me so I thank you too for your help and suggestion. I will look more into my options now.

I guess I'm just a little scared because this is the first time I really starting to want to look into it more. Being that I live in Vancouver, I've thought of getting in touch with people at UBC to see if any studies or research have taken place and to be a part of something.

But thanks for the direction. At least now I know where to start.

User avatar
HairLossFight.com
Site Admin
Posts: 1218
Joined: Sun Aug 24, 2003 3:24 am
Hair Loss Type: Androgenetic Alopecia (Male Pattern Baldness)
Norwood Level: Norwood III Vertex
Have you had a hair transplant?: Yes

Post by HairLossFight.com » Sun Oct 03, 2004 7:13 pm

Reney,

In fact there are people at UBC doing studies into treating various kinds of hair loss, and the head of all the research is Dr. Jerry Shapiro. I think if anyone can help you possibly get your own hair back through treatments, in Vancouver, he's the person.

Nice coincidence eh?

:wink:

Good luck, and keep us posted.

Best Regards,
Sam

reney
New Member
Posts: 4
Joined: Sun Oct 03, 2004 12:07 am
Hair Loss Type: Don't Know
Have you had a hair transplant?: No

Post by reney » Fri Oct 08, 2004 10:02 am

Well I spoke to my mom about Dr. Jerry Shapiro and she and I have decided to gather more information about him (what kinds of research he's done, etc etc), take it to my Family GP, and then go see him. I want my mom there as my personal hand to hold and my GP for a trusted hand to hold. My GP has looked over my health for the last 15 years or so.

So now it's time to gather information. I've tried looking online and not found much success. Is there somewhere in particular I can look for the research done by Dr. Jerry Shapiro for alopecia... say, in the last 5 years?

I need some help on this and any would be great.

(If I don't find anything online or in hard copy, I will go to his office and gather something from whatever I can get there)

reney
New Member
Posts: 4
Joined: Sun Oct 03, 2004 12:07 am
Hair Loss Type: Don't Know
Have you had a hair transplant?: No

Post by reney » Thu Oct 14, 2004 12:33 pm

any help?

User avatar
HairLossFight.com
Site Admin
Posts: 1218
Joined: Sun Aug 24, 2003 3:24 am
Hair Loss Type: Androgenetic Alopecia (Male Pattern Baldness)
Norwood Level: Norwood III Vertex
Have you had a hair transplant?: Yes

Post by HairLossFight.com » Sat Oct 16, 2004 2:14 pm

Hi Reney,

Sorry I have not gotten back to you sooner. I have a new job that is taking enormous amounts of my time.

Anyway, here are some resources for you about Dr. Shapiro. He has co-written a book called:

Alopecia Areata: Understanding and Coping with Hair Loss

that gets pretty good ratings on Amazon.com. Also he is responsible for the material at the following website, part of UBC's dermatology site:

http://www.derm.ubc.ca/hairinfo/

He has published numerous articles on hair loss. To see them just go to:

http://www.pubmed.net and in the search box enter: Shapiro J hair

Most of the articles that come up are his work.

I hope this helps. Hang in there and take care of yourself and keep me posted on your progress. Best of luck!

Sam

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