Alopecia World
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The Slow Loss
Hi everyone:
I'm new to these boards, and I've spent a lot of time reading your stories. You guys seem to have a very tight-knit community here and though I usually resist participating in these kinds of things, I'm ready to take the plunge.
I've been battling AA for 9 or so years, starting with small spots here and there, and then growing to eyebrows and larger patches over the last year. I'm lucky to have pretty thick hair, and I've for the most part had a pretty good attitude about things (it's likely easier for guys that for girls, I acknowledge).
Recently, however, tons of hair has been falling out. I still look like I have a full head, but what's there feels like straw and every morning reams of it come out. I've been seeing a dermatologist for a year or so and had actually recovered a lot of hair this summer before the latest episode. Last week, I asked her if there was anything I could do and she suggested prednisone: though, to be fair, she warned that it was a nasty drug and she wanted to watch me very closely.
Since taking the prednisone, I feel like I've taken a big downturn, mentally. I can't sleep easily, my hair still falls out and I keep on obsessing about my stupid hair. I've been trying to assess all these online cures (ie: Alopecia Trival), and I've started doing acupuncture (it at least helps with the stress).
Half of these "cures" or "alternative treatments" are bunk, right? Or not?
I'm curious how people here started letting go as they realized that they were developing AU or AT.
It seems like a hard pill to swallow, but I know it can be done.
Anyway, sorry for the rambling note by way of introduction.
I'm new to these boards, and I've spent a lot of time reading your stories. You guys seem to have a very tight-knit community here and though I usually resist participating in these kinds of things, I'm ready to take the plunge.
I've been battling AA for 9 or so years, starting with small spots here and there, and then growing to eyebrows and larger patches over the last year. I'm lucky to have pretty thick hair, and I've for the most part had a pretty good attitude about things (it's likely easier for guys that for girls, I acknowledge).
Recently, however, tons of hair has been falling out. I still look like I have a full head, but what's there feels like straw and every morning reams of it come out. I've been seeing a dermatologist for a year or so and had actually recovered a lot of hair this summer before the latest episode. Last week, I asked her if there was anything I could do and she suggested prednisone: though, to be fair, she warned that it was a nasty drug and she wanted to watch me very closely.
Since taking the prednisone, I feel like I've taken a big downturn, mentally. I can't sleep easily, my hair still falls out and I keep on obsessing about my stupid hair. I've been trying to assess all these online cures (ie: Alopecia Trival), and I've started doing acupuncture (it at least helps with the stress).
Half of these "cures" or "alternative treatments" are bunk, right? Or not?
I'm curious how people here started letting go as they realized that they were developing AU or AT.
It seems like a hard pill to swallow, but I know it can be done.
Anyway, sorry for the rambling note by way of introduction.
Replies to This Discussion
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Permalink Reply by Tallgirl on
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I was angry at 40 when it was time to take my 40th birthday photo portrait with a bushy, bad wig on to hide my AT, and I scowled through most of the shots. Then I decided on a scarf for my birthday dinner, which turned out to be a surprise party at a steak restaurant with a great view. My ex (I was married then) actually did something RIGHT by using my address book to find many old pals to attend and give loving tributes. (Ah, birthdays!) I have a great photo of me in the scarf thingy, digging into a tall ice cream sundae at that dinner. Friends=therapy. I left the shots, prednisone and cortisone behind, and used the money instead for education, better head coverings, and some fun times. No side effects.
Go get a great hat instead and go to some jazz events! Party on, Dude!
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Permalink Reply by Carol on
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THERE IS NO CURE FOR ALOPECIA!!! Although I'm sure many will argue, I'm convinced that treatments have no effect on most people and that it is purely coincidental that the treatments looks like they're working. Alopecia is highly unpredictable and there is no telling what it will do and when, no scientist or doctor can answer that truthfully. There are many who have given up on treatments and their hair continues to do what it wants. I had AA for 12 years, AT for about 3 and AU until about three years ago and now it's doing something (like the opposite of AA - I have patches of hair surrounded by baldness). Alopecia can come on fast and hard or take it's sweet time, teasing you and causing a roller coaster ride of emotions. The closest thing we have to a cure is acceptance but that too is learned at your own pace and even when you think you're finally able to cope, bad days can sneak up on you (you're only human afterall). If you haven't yet, I suggest you at least attend one support group meeting and if your hair is falling out at an incredible rate you may want to think about shaving your head and getting over the hump of clinging to what's left. If it grows back then it grows back, no big deal but if it's going to be gone for a while or keep falling out it's mentally harmful to keep mourning over something you have absolutely no control over, shaving has proven to be relieving, freeing, and an action that lets us feel we are in control of the situation (plus a bald head looks incredibly hot when paired up with an awesome pair of shades!). Good luck in whatever you decide! :)
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Permalink Reply by SamirK on
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Well thanks everyone. I hear loud and clear what you are saying, and I've been preparing for this eventuality ever since the day the dermatologist told me the condition gets worse over age.
I think today's the day I will do the shave. I'll let you know how it goes!
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Just one final question: When your hair starts to feel like straw, it's probably on it's way out, right?
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Permalink Reply by Tracey Tiznor on
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I need a "LIKE" button for Tallgirls response
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Well, I went ahead and did it. I have a bag of hair to show for my troubles. I also posted this picture to facebook and lo and behold, a ton of friends also have AA...
Thanks everyone for your support. I think I just needed to talk my way through it, but now that it's done I feel a great weight lifted off my shoulders. - Attachments:
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Photo 17.jpg, 74 KB
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Permalink Reply by Sam Sam on
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I had two treatments during the first spots of AA. I now have AT and I was always told by doctors their is no cure at least this world couldn't give it.I have had alopecia for 10 years actually 9 but i like to round things off >>>> for the first 5 years it was very emotional. I THOUGHT I WAS GOING TO LOSE MY MIND. I went into hiding mode (i guess this is most of the reactions) in the last 5 years I have been in healing mode (weather it was finding someone to talk to, or taking pictures of myself bald and showing off, now i am able to walk around bald.)
I am seeking how i can live a "normal life" With the help of my faith, I evaulated everything about me, I understood that alopecia wasn't the cause of my shyness,or why i let people get over. So I dealt with how I saw myself first and then i dealt with alopecia. I wish i had done this soonner.
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Permalink Reply by Frank on
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I need some advices. My 13 year old daughter has AA. It started at the beginning of July this year, and within 2 weeks, most of her hair fell off especailly the top. After the initial 2 to 3 weeks, it stablized and she has a bit of hair left and could make a small pony tail. She is now wearing a bandana back to school. With the bandana, it covers the top part and the small pony tail sticking out. Most of her classmates thought it is her fashion statement. She is afraid of going to gym and exercise. How should I encourage her or should I let it sink in a little - it is just over 2 months she has this condition. I encourage her to let her classmate know about her condition but she is reluctant.
Her derm suggested DCP, and we are not really keen of this therapy especially the potential side effects. It is bad that she loses her hair, it could be worse that to have blisters on the head. I am a bit lost. Any advices?? Thanks.
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I can only speak for myself, but I do know that taking oral prednisone was really tough. Most people see hair grow back, but at the expense of some pretty severe side effects, including weight gain, facial changes, and anxiety. In my case the prednisone contributed to my lack of sleep and sense of anxiety, which made the hair fall out even faster.
I'm no expert, but from what other people have said on this board, I think you should let her decide what she wants to do. If she wants to hide it for a bit, that's her right to do so... Perhaps getting her a nice wig would help with the initial shock. How she deals with it will change over time.
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