alopecia areata

I know it has been so long since I have posted, and so much also has happened. I am still struggling to really go deeply into it all, but I have made some posts on Instagram and a YouTube video to discuss what I have been dealing with this past year.

Long story super short. My father passed away last year, and I recently was diagnosed with a NEW type of hair loss. This is of course in addition to the hair loss I have had for 24 years – female pattern baldness (androgenetic alopecia). I now also have a variant of alopecia areata. I see it referenced as Diffuse Alopecia Areata and also Alopecia Areata Incognita, I’m truly not sure if they are the same, but they are seemingly used interchangeably online. I had no idea it was possible to have more than one type of hair loss. Well, it is.

My body went through so much last year… SO much. My health suffered tremendously, and I share in the video some snapshots of how my face was looking during this time. This full on assault to my immune system is what is to be believed to have very likely triggered this episode of alopecia areata. It does run in my family, both of my brothers experienced patches of alopecia areata on their beards (now resolved), and I have a cousin in Panama who had alopecia areata on her scalp. It was there, just waiting…

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Living a Bald Life

by Y on January 15, 2009

Mary discusses living with alopecia, and how attending a Bald Girls Do Lunch event dramatically changed her life. Read Mary’s full story here.





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Our Brave New World – Support Group

by Y on September 19, 2008

Brave New WorldHi everyone, I just want to let all you ladies know about a support group that has been started by one of our newest members, Angela. She has titled the group “Our Brave New World” and has written and introduction:

“Hello my sisters! I wanted to create a group for us to explore this new chapter in our lives. I don’t think any of us ever thought when we were little girls…”Gee, when I grow up I want to be an Alopecian!” or “I can’t wait to go bald!” But here we are. Feel free to share your thoughts, inspiration and encouragement as we step into Our Brave New World.”

Please stop by the community, join the group and join us in healing. To join the network, click here. Once you are signed up and logged in, follow this link to join the group: http://community.womenshairlossproject.com/group.php?group_id=5 or just click on the “group” button you will see in the top navigation bar, then click on the tab “Browse Groups.” As always please send me an email if you have any difficulty, women@womenshairlossproject.com





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Hair Loss Drove Me To SuicideI found this article that was posted yesterday on the Mirror.co.uk site. It is about a woman whose hair loss nearly killed her. It is a very touching article so I’m reposting it here for all of the readers:

Shoving a handful of pills into my mouth, I washed them down with a big swig of vodka.

I didn’t even know what I’d taken – I’d grabbed whatever was in the medicine cabinet and hoped it would end my pain. Then, I called one of my friends.

“I’ve taken an overdose,” I sobbed into the phone.

My mum Teresa picked up the receiver downstairs and had heard everything.

She piled me into the car and took me to hospital, near our home in Bradford, West Yorkshire.

“Why?”

She kept asking. “My hair!” I cried. “No one knows what it’s like.”

Up until the age of 13, I’d been just like everyone else. Then, suddenly, my long brown hair started to fall out in clumps.

At first, it was just a few places, here and there. But, gradually, more patches began to appear. I tried covering it up, doing my hair in different styles, using hair thickening creams and sprays. But nothing worked. There was no getting away from it – I was going bald.

The doctors diagnosed alopecia. “We don’t know what has caused it,” the specialist said. “It could have been shock.”

One of my grandmothers has passed away and I’d moved house and schools.

But I’d never dreamed it would make me lose my hair.

Going to school became a nightmare. “Hey, baldie!” the kids would shout at me down the corridor. [click to continue…]





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What Is Wrong With Me? Jessica's Hair Loss StoryI am 24 and of fairly good health. Then on Febuary 14th 2007 I noticed a small bald spot on the top of my head about the size of a dime. I freaked out. I was in a new relationship and thought who could love me if I go bald? I spent months trying to figure out what was wrong with me….my spot growing every day. Within a few months the spot had grown to 2 inches across and was very noticible. I began using a topical steroid cream that caused my scalp to itch and burn but I still hoped it would work. After 6 weeks or so I stopped using it because i was seeing no results. Today is October 31st 2007 and my hair is growing back great on its own terms. It is nearly an inch long and covers the whole spot. I thought it was over. I have been so relieved about my hair growth. My doctor told me it probably wouldn’t happen again. Then I went to my mom’s shop to get a hair cut. She found another spot…. on the back of my head now. I have been tested for everything under the sun. I am at the end of my rope. Why can’t they find whats wrong with me? I got my final test results also today. I can’t believe I was actually hoping it was Lupus so I had an answer. My tests are normal. So here I sit a young woman 24, with yet another bald spot, no answers, no health insurance to get more tests, sick all the time and trying to cope with the everyday struggles of being a single mom. I just wish someone could tell me what is wrong with my body and treat the source instead of the symtoms. At least I have my son and my boyfriend who loves me even if I go totaly bald!

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Dear Jessica,

I am not a doctor, but it definitely sounds like alopecia areata. Did they diagnose you with that? You didn’t mention it in your email, and I’m really surprised that your doctor would be unfamiliar with that disorder. You did mention that you used a steriod cream and that is a pretty common treatment prescribed for this type of hair loss. Alopecia areata is an autoimmune disease in which the body mistakenly treats its hair follicles as foreign tissue and suppresses or stops hair growth. No one really knows how or why this develops. For some reason the immune system is inappropriately activated and attacks hair follicles. Alopecia areata often appears as well defined circular bald patches on the scalp. Many people will get just one or two patches, but for some the hair loss can be extensive. If only one spot appears on the scalp it is called alopecia areata monolocularis. If more than one area if affected it is called alopecia areata multilocularis. People that develop these patches often experiences spontaneous recovery within two years even without treatment. For some the condition is more persistent and they can have repeated cycles of hair loss regrowth. [click to continue…]





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Schoolgirl Struck By Alopecia Loses All Her Hair - In Three DaysBy: Liz Hull

A schoolgirl has described how she went bald in three days after developing an extreme form of alopecia.

Jordana Seville, 15, spotted the first bare patch among her thick blonde locks last Wednesday.

The same day further large clumps of hair started falling out. Within 72 hours she had lost nearly all the hair on her head.

“It was really scary when my hair just started coming out for no reason,” she said.

“At first I could cover the front with a bandana, but then the back started falling out too so I had to shave it off.

“People have been really shocked to see me but people have reacted much better to it than I thought.

“Last week I had a full head of hair and now I have none.”

It is not clear why Jordana developed alopecia although it can be triggered in teenage girls by hormonal changes or stress.

Jordana’s mother, Ashley, 43, took her to see their GP who has referred her to a specialist dermatologist.

“I’m a qualified hairdresser so as soon as Jordana showed me the bald patch I knew to take her to a doctor,” said the mother-of-three from Poulton-le-Fylde in Lancashire.

“At this stage we don’t know whether or not her hair will grow back, but I have to say I’m very proud of the way she has coped.

“I actually think her new look is quite striking. Many people have commented that it looks nice.”

Jordana, who has been off school since her hair loss began, said: “I’m a bit worried about going back. A lot of my friends have long hair like I had, so I’m not sure what people will say.

“I wanted to speak out because alopecia is more common than people think and often occurs in teenage girls.

“It isn’t all that bad, the doctor has been brilliant and I have looked into the possibility of wigs.” [click to continue…]





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Best Things To Do - The Bald and The Beautiful

Accept yourself, let it go and laugh. You’re not “suffering” from baldness. You’re suffering from sadness brought on by your attitude towards being bald.

I first exhibited Alopecia Areata in 1984 at age 10. My hair all grew back by age 14. At age 26 it all fell out again. May 2006 all my body hair fell out and that is where I stand today. (Pretty convenient on my legs and bikini line).

The biggest challenge that I’ve had since first losing my hair is learning to like myself despite my baldness. I still struggle with that sometimes. But learning to laugh at your baldness and allowing others to laugh at it
makes it so much easier to deal with.

If you are bald with no life threatening conditions, count your blessings. Yes, it sucks that I have to draw on eyebrows daily and that my head sweats when I wear a wig, but thank GOD I’m healthy.

So much of your hair loss is driven by your attitude. Choose happiness and choose peace. And don’t worry about hair – you get to sleep in 10 min. more because you don’t have to blow dry or curl it! 🙂

– The Bald and The Beautiful

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Dear The Bald and The Beautiful,

Thank you for writing and sharing your incredibly positive attitude with everyone. Everyday I work on accepting myself because I know with that, I will be able to take back control of my uncontrollable hair loss. It’s very hard, but I’m better than I was before. It’s so important to hear positive stories like yours. What you have achieved is so invaluable, you seem to have reached a place that so many of us strive for… self acceptance.

~Y





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Looking For A Hair Loss Support Group

by Y on October 5, 2007

Looking For A Hair Loss Support Group

Question:

I am 40 years old and I am bald. I began losing my hair in March of 2007. It has grown a little then falls out, it falls out all over. Starts out in patches then completely goes bald (which is where I am now). I just would like to know I’m not alone. I am looking for a support group in my area.
Thanks,
Gina

Answer:

Dear Gina,

You are definitely not alone. There are unfortunately an extremely high number of women who suffer with hair loss. According to The American Hair Loss Association that number is around 40 million. That makes you very much NOT alone.

As far as support groups, currently the only ones I am aware of are being done by a non profit organization called “Bald Girls Do Lunch.

Their next event is being held in New York City on October 7th and is called “Alopecia Areata Day of Beauty.” The fundraiser is being held to raise funds to support their lunch meetings across the country.

After that the next meetings will be held in Scottsdale, AZ on October 13 and then Philadelphia, PA on November 3rd.

More About Bald Girls Do Lunch:

Bald Girls Do Lunch, is the only non-profit dedicated specifically to helping women with the auto-immune hair loss condition Alopecia Areata. Visit the website for more information about the lunches and to read testimonials. [click to continue…]





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On The Bright Side – Hair Loss Story

by Y on October 1, 2007

On The Bright Side - Hair Loss StoryMost of you will smile when you read this, I hope! We all need to keep smiling, no matter what. My hair loss story began in August 2007 when I rubbed the left side of my head, through the hair (I have very long dark hair that I wear up in an “old-lady” bun. I immediately had the never before experienced sensation of feeling absolutely bald scalp on my own head! I didn’t panic, but I went to the mirror to see what was up. Well, what was out, not up, was the hair that had covered about a 5- inch square area of my scalp! Absolutely bald. I really don’t know when it fell out, for sure. I’m not much of a self-absorbed person vis-à-vis my hair, etc., and with it being so long, I just wash, dry, brush, and pin up.

Anyway, I did ask my doctor about it. She did a thyroid test- all OK- and recommended that I see a dermatologist, which I did NOT do. I read about alopecia online, and decided that there was no effective treatment. I have enough trouble being a woman and now a partially bald woman- without being a guinea pig too. Of course, the fact that my long hair and the style I wore kept others from seeing my problem helped in my decision. Perhaps lazy, perhaps stupid. I don’t know.

Over the past year, I developed an extension of the bald patch to the rear a little, not a lot, and also what seems to be an attempt by my hair to establish a bald patch right at the hairline. That will be a big problem if it continues. We’ll have to see.

Meanwhile, earlier this year, I decided to purchase a wig- just in case I woke up with NO hair at all! I got a dark auburn bob-style inexpensive wig, and it didn’t look too bad- although it didn’t look like “me,” either. Well, I hadn’t warned my husband, and when he came into the kitchen door, I was standing in plain view in the den, facing sideways to him. He opens the door, takes one look, and says, “What the hell is going on here?” He really thought some strange woman had invaded our home! After he got over the shock, he still didn’t like it, so I haven’t worn it- but I have kept it just in case. The good news is that about two weeks ago I noticed that the original patch now has some hair – about 1 inch long- repopulating portions of it. So that gives me some hope.

The best news is that I may be partially bald, but I’m healthy and not bald from the effects of treatment for some deadly disease. So I give thanks. It could be worse.





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Also Afflicted, Pat’s Story

by Y on September 29, 2007

I have had round patches of hair missing for several years. Fortunately, it grew back after months of rather inventive hairdos. There were years where I had absolutely no problem. Then the familiar sensation would return, a small bump pops up (like a bug bite), the hair falls out and a new bald spot is
formed.

Over the years, the spots have gotten larger. One of the ones I have now covers almost all of the top of the back of my head. This particular spot is finally growing hair (after a whole year) and contains a wonderful little tuft approximately one inch in length. It sticks out pretty good right thereon the top of the back of my head.

I am not a person who experiments. Many years ago I sought advise from a dermatologist who administered shots into the scalp. I’ve asked regular physicians, tried volumizing shampoos and conditioners, rubbed ointments into my head and decided, screw it. I’m not doing the potions and the lotions nor am I doing the pills or the shots. Mind you, I’ve been very lucky that it hasn’t fallen out to the degree that I have now seen in other women. The sad thing is that I have been dealing with it for so long, that I feel like it is just another part of life.

I had absolutely no idea it affected so many women! Perhaps a solid solution is forthcoming.

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Pat, Thank you so much for sharing your story. Reading the different stories I see that some of our hair loss situation’s our so very different, some the same. Depending on where you are in your hair loss, some women seem to have adapted better, others not, but at some point we all have known intimately the struggles and insecurities that hair loss brings out in the women it attacks. Your hair loss sounds like it is alopecia areata. Is that what you were diagnosed with? Like you said, I hope a solid solution is forthcoming as well. It’s long over due, and not enough emphasis has been put towards figuring out exactly what causes women to lose their hair.

Updated

Pat Writes: Yes, I was finally diagnosed with alopecia areata in 2001. [click to continue…]





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