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I can not believe that I am NOT alone!
I have always been alone in my disease and I'll try to be brief as I type through my tears of happiness at finding this forum.
At the age of 12, I was diagnosed with hidradenitis suppurativa. This is an auto immune disease which causes very painful boils (you can google it for just where these boils like to erupt from...). No one I know has this and I have never really spoken about it with any of my friends. It's too embarrassing and very painful so most of my life, I just dealt with the pain and no one ever knew. I actually thought I was the only one with this disease!
Well, then a less than dime-sized bumpy thing appeared on my scalp. I didn't pay it any attention because of my condition. It remained there for years and now, some 20 odd years later, it has been diagnosed as scarring alopecia and/or hidradenitis suppurativa with scalp involvment (those doctors crack me up with the terms they come up with). I had a very bad relaxer experience in May which I believe aggravated it because it blew up immediately afterwards.
Now that dime is maturing into a dollar bill and the itching/burning is just !!! The hair around my edges, all around my edges, is slowing disappearing too. I think I'm still in the denial stage because I believe that by using henna and non sls products, I can save what's left of my hair. I have even come to believe that this wig I now wear (which I HATE) is only a temporary thing. It just hit me recently to google scarring alopecia and I did find a few sites. But then I found Youtube videos from dozens of beautiful, brave women (and I single them out because a bald man is sexy, macho, gorgeous...acceptable) and I just lost it. I am NOT alone.
You know that I could go on but I'm new and don't want to turn any of you off with my chatter! LOL I just want you to know that you are touching and reaching so many people in cyberspace, so many people who will never 'come out' because of their own personal reasons. But me, I need to talk about this. I need to have a final cry and get this out of my system. I need to learn from all of you (men and women) how to be brave. So,
hello. I am DesertAngel and I have scarring alopecia.
At the age of 12, I was diagnosed with hidradenitis suppurativa. This is an auto immune disease which causes very painful boils (you can google it for just where these boils like to erupt from...). No one I know has this and I have never really spoken about it with any of my friends. It's too embarrassing and very painful so most of my life, I just dealt with the pain and no one ever knew. I actually thought I was the only one with this disease!
Well, then a less than dime-sized bumpy thing appeared on my scalp. I didn't pay it any attention because of my condition. It remained there for years and now, some 20 odd years later, it has been diagnosed as scarring alopecia and/or hidradenitis suppurativa with scalp involvment (those doctors crack me up with the terms they come up with). I had a very bad relaxer experience in May which I believe aggravated it because it blew up immediately afterwards.
Now that dime is maturing into a dollar bill and the itching/burning is just !!! The hair around my edges, all around my edges, is slowing disappearing too. I think I'm still in the denial stage because I believe that by using henna and non sls products, I can save what's left of my hair. I have even come to believe that this wig I now wear (which I HATE) is only a temporary thing. It just hit me recently to google scarring alopecia and I did find a few sites. But then I found Youtube videos from dozens of beautiful, brave women (and I single them out because a bald man is sexy, macho, gorgeous...acceptable) and I just lost it. I am NOT alone.
You know that I could go on but I'm new and don't want to turn any of you off with my chatter! LOL I just want you to know that you are touching and reaching so many people in cyberspace, so many people who will never 'come out' because of their own personal reasons. But me, I need to talk about this. I need to have a final cry and get this out of my system. I need to learn from all of you (men and women) how to be brave. So,
hello. I am DesertAngel and I have scarring alopecia.
Replies to This Discussion
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Permalink Reply by Karen on
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Hi DesertAngel. I can definitely relate to you feeling alone. Even knowing there are others out there like me, I still feel like I am the ONLY one! but I hope in time I will find my peace with this. You sound very strong and I appreciate you sharing the youtube info. I'm going to look for the videos. Anyway, glad to have you here:) BTW- we're all hear to listen, so talk away. It's never just chatter!!!!! :)
Karen -
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Permalink Reply by DesertAngel on
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Hi, Angela and Karen and thanks for welcoming me! I found this site through a video by CrownedRegal (she's a tigress isn't she?!) and I'm adding Alopecianmuse to my list of favs too. You can never have enough muscle. LOL
I was reading through some of the boards here and this disease is something! But the way most here are handling it is sooooo marvelous. How did you (all of you here) become so strong? I'm still in the learning stage but when you have to survive on knowledge, you learn fast.
Well, I'll spend this weekend reading more of this board and hopefully join you in other threads. It's such a good feeling find 'family' you never knew you had.
Have a great weekend! :-D -
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