Comment by Tallgirl on October 28, 2012 at 12:28pm

Those with remission since this site began only a few years ago may have never had need to search for a site in the first place...or may have been secretive about their alopecia or about exposing themselves to strangers online. The search for advice and research takes up a lot of one's day, so maybe they also welcome the freedom out of the Worry Muck, and are happily going back to whatever they thought they had to give up while bald or spotty. Yes, there are depressing, down or bitter folk on AW, but you can just avoid them. I do. Find those who cheer you and have good factual information.

Comment by Starshine on October 28, 2012 at 2:13pm

Hi Tracey. I know how you feel. I have had diffuse AA for about a year and, like you, have lost about 50 percent of my hair. I'm not ready to raise the white flag yet either. I just recently started treatment with steroids and am hoping for the best. I may feel differently at some point, but for now, I'm still fighting. I firmly believe there is always hope with this very unpredictable condition.

Comment by Tallgirl on October 28, 2012 at 3:16pm

From American Academy of Dermatology, Summer Conference, August, 2012

Today's date: October 28, 2012

Researcher discovers ‘killer bees’ spawning alopecia areata

Angela M. Christiano, PhD

Alopecia areata is like a swarm of bees in the form of killer CD8 T cells attracted by NKG2D ligands. So concluded Angela M. Christiano, PhD, during her presentation, "Genetics of Alopecia Areata: What's All the Buzz About?" for Friday's Hot Topics session.

"We wanted to learn whether we could use modern genetic techniques to dissect the genetic architecture of alopecia areata and to understand the genes that control those interactions that go wrong between the hair follicle and the immune system," said Dr. Christiano, professor, departments of dermatology and genetics and development, Columbia University, New York.

Alopecia areata results from the collapse of the immune privilege of the hair follicle, she noted. The disease has a high heritability among family members, with a 10-fold increased risk for first-degree relatives of affected individuals.

"It has taken us 15 months to go from finding the genes to actually talking about drug targets," Dr. Christiano said.

Common pathways in other autoimmune diseases (rheumatoid arthritis, celiac disease, and type 1 diabetes) involve NK ligands in target organs. In alopecia areata, research has discovered an overexpression in the hair follicle of the ULBP3 gene, which encodes the NKG2D ligand.

"The aberrant expression of NK-activating ligands in genetically predisposed individuals may induce or exacerbate disease," Dr. Christiano said.

In mouse studies, she and fellow researchers wanted to test the presence and define the nature of these alopecia areata killer bees — NKG2D ligands — in mice. In mice with alopecia areata, they found the skin and lymph nodes loaded with these NKG2D ligand killer bees, while the control mice had none. Also, these NKG2D ligand killer bees are "armed and dangerous with IL-15 receptors."

"As a biomarker, we want to see these killer bees go down to zero," Dr. Christiano said. "The question came up about whether we could cut off the fuel supply for these killer bees, so one thing that has been very well defined about these immune cells is that they require IL-15 as fuel for their growth."

Previous research has found that the blockade of IL-15 appears effective in treating rheumatoid arthritis, psoriasis, and celiac disease, so she and fellow researchers initiated additional mouse studies to determine the effectiveness of anti-IL-15R (beta) blockade in preventing alopecia areata. What they discovered is that anti-IL-15R (beta) eliminates NKG2D ligand killer bees from the blood.

"We are very interested in IL-15 blockade either in infusion or topical form," Dr. Christiano said. "Downstream, from IL-15 are a number of kinases, particularly kinases JAK1 and JAK2, and there are drugs in development, particularly topicals, for those targets."

She also addressed how the existing drug, abatacept, targets CTLA4-Ig, which has proven to prevent onset of alopecia areata in the C3H-HeJ mouse model. These findings, she noted, provide essential pre-clinical data supporting the efficacy of CTLA4-Ig.

This research "is just a flavor of how we can use genetics and genomics to dissect these complicated diseases at a very fine level and think about ways of intervening at every step," Dr. Christiano said.

Comment by Jaclyn on October 28, 2012 at 9:42pm

I don't come on here much, mainly because I feel guilty about my regrowth. I've read so many stories from people here who seem like their alopecia has shattered so much of their confidence, and I don't ever want my regrowth to be a source of sadness or jealousy or anything negative for someone else.
But if hopeful stories is what you're looking for, I'll share mine. :) As you can see from my pic, I shaved my head. In 2.5 months I'd lost about 75% of my hair, so I took the plunge and shaved the rest. It's been about 5.5 months since the big shave, and ALL of my hair is back. A different colour and a slightly different texture, but otherwise all back. Just after being diagnosed with AA I switched to an anti-inflammatory diet - a strict Paleo diet - and I do think that helped a great deal. It's known for being very beneficial for autoimmune conditions.

I realize that my hair could fall out again at any time. I know my AA is part of me and always will be, but I stopped thinking about it after I shaved and was no longer dealing with the trauma of shedding. Personally, shaving was liberating and empowering, and I really feel like it was the turning point in my journey.

I wish you all the best - and lots of permanent regrowth. :)

Comment by Sarah Bitar on October 28, 2012 at 9:50pm

hmmm my story of hope.... well, I've been bald since I was 5 and have had alopecia since I was 3. I went to a catholic school, where it was hell on earth. I was bullied daily from second gra to my senior year of highschool. I get stares EVERYWHERE I go, and so many stupid questions. When I was younger, I was so sick of everything! Wigs are hot and itchy and being bald sucks! Every way I looked at it, I was in this horrible situation that I couldn't hide from. Plus, i never felt like myself with hair on. But... in the same vain, I was "that" girl when i didn't wear hair. I hated my life, my world and my body. So I became mad. Mad that I couldn't be "normal"; mad that i stood out, mad that EVERYONE thought I had cancer, and royally pissed at God. Why would he put me through this? How could he let me suffer? Why would I be the target for every bully at a CATHOLIC school? So, I was mean. I was mean every day, every second, about everything. I was a little witch. But, in seventh grade, my family and I went to DC for the NAAF conference. I was in shock! All these beautiful, strong, women who were bald! How could this be??? We were freaks of nature! we stood out! Yet, they were doing it. They lived their lives and looked fierce doing so. They wore fun earrings and beautiful eye makeup... you never even noticed their shiny, naked heads. I WAS IN SHOCK AND AWE. I even saw girls, my age and younger, running around and having so much fun.... and the boys! so many good looking boys without hair! One moment, the one moment that changed it all. A woman had a TATTOO ON HER HEAD. Can you imaging? me, 12 years old, seeing this crazy, spit fire, woman with a tattoo on her head!! So I did what was natural, I asked questions. "Didn't that hurt!??!??" "Not as much as it hurt losing all of my hair, and being different." and that was it. from then on, I knew what I would be doing for my 18th birthday. I wanted to be like her! U wanted to be confident and crazy and fun. AND I WANTED SOME INK. I had 6 years to plan. What should I get? Should I get my head completely covered, like that woman? Should I get flowers, or... what? What could I get? Would this help me like myself? Could a tattoo change your thoughts when you looked into the mirror? No, a tattoo won't give you self-esteem. I had a lot of work to do before I got it. But, that's OK, I had 6 years. Plus, I wanted to figure out how I could do my makeup as well as those women!! I wasn't ready to take on the world without a wig until I was about 17. After so many issues caused with boys, friends and family; it was so hard finding that courage. And of course, the first day i put on that lovely private school uniform, and left my hair at home, was a challenge. "Is that girl new?" "is she sick?" "What happened to her?" My favorite rumor was that I had a mental breakdown and pulled a Britney Spears. Ugh, why were people so stupid? Even teachers asked me what had happened. Really? most of my teachers knew me for 6+ years.... and they didn't know?? Whatever, I was just happy I didn't have to wear that stupid "mop" on my head. Plus, over the years I had found my "niche". I'm a Theater freak, I'm a singer and I was a bowler. I had my own friends that didn't care one way or the other about my hair.I had worked on myself day after day, and year after year, and I liked myself. I was alright with my hair and myself to the point where I could look in the mirror. Plus, I could do makeup (mine and others) really well. And they all knew I was going to get my ink, but I still had no idea what!! One day, it came to me "I should get something music related". Makes sense... I was a singer, an actress, and music was my world. but what? Lyrics? No, that wouldn't be much fun to show off... So, sheet music it is! Now, what song? Well, it wold have to be timeless, a song that would speak to me my whole life. No pressure, or anything, right? I narrowed it down to some kind of song from a musical. They never go out of style, musicals are infinite, and they (typically) have meanings behind them. I need a musical that's about looking past what you see on the outside, and that people are so much more on the inside. THAT'S IT! The song "facade" from Jekyll and Hyde. and the last 3 measures, where the vocalist sings "look behind the Facade". That's what I'm getting! So, 5 days after my (18th) birthday, and two and a half hours on a table, I had my ink. Now, it was my turn to be that woman. I got to be a new kind of confidant. Now, people ask me why I chose to shave my head, in order to get a tattoo. I'm not "sick" anymore. People don't ask me if i'm "on vacation with make a wish". People think I'm tough, and typically don't mess with me. My artist is awesome. I told him what I wanted, and he made it come to life. It's beautiful! My mom has told me, a few different times, that she sees a difference in how people view me, and how I carry myself. I'm not in remission, but I don't suffer either. I've tried every treatment out there, short of injections into my scalp, with no luck. In all honesty, I don't think you need stories of hope. You don't even need hair. All you need to do is love yourself, and surround yourself with those who love you. Yeah, some people will always be stupid, and ask stupid questions. But life is what you make of it. Why bother sulking? It's just hair. Even I have my bad days! But you can't let this get you down. Science has told me, on many occasions that I won't be able to grow a full head of healthy hair. So, I decorated.took me 15 years to go from a victim to a survivor. Keep your head held high! Stop looking at your outside shell, Look behind the facade!!

Comment by Tracey on October 30, 2012 at 8:20pm

Awesome responses, people!! Yay! All very different takes on the question, and all fabulous!! LOVE to hear about the latest research, Tallgirl, especially the research focused on prevention/cure rather than just hair regrowth, and I had missed this info. Thank you for posting. Jaclyn- I for one adore hearing come back stories, so THANK YOU and congratulations!! And, Sarah, you rock! What an amazingly strong woman you are! Every day I am thankful I managed to avoid any hair loss until I was in my 40's, married to a sweet fella and well beyond the schoolyard teasing. Now I sit and watch my son's head (so far healthy and hairy!) and wonder what lies ahead for him. It's so terrific to hear tales like yours to remember that there are many different paths one can take in response to alopecia. Thank you!!

Comment by laura on October 31, 2012 at 4:20am

i have a hopefull story,i had shaved my head last october after trying in vain to cover my spots up and since then i tried evrything(and got a little obsessed).....i made some huge life decisions to cut back my stress,started on prebiotics,stopped smoking and started intermitent fasting to cut down inflamation......i dont know for sure if its just coincidence but i have had full head of hair since spring and fingers crossed it keeps growing.....alopecia hands out some drastic life lessons and lets us see the farce of vanity.....i will never take my hair for granted again x

Comment by Meg on October 31, 2012 at 4:22am

Hi Tracey! Like Jaclyn, I don't come on here much as my hair has regrown. I was also very lucky with my AA which wasn't severe, I could largely hide it, and I haven't had to go through the struggles that a lot of others have. I have a great amount of admiration for the people whose stories I read on this site. If it is hope you are after, I can tell you that my hair has fully grown back - my dermatologist prescribed a steroid lotion which I applied every night, and now it is about two inches long. I am very lucky, and I do feel a bit guilty posting this, but if what you want is for your hair to grow back, I am proof that it can happen!

Comment by seamonster on October 31, 2012 at 5:12am

Hi Dear,
My hair has grown back as well so I rarely come here. Just like the other posters, I went on a raw diet, drank herbal teas, left my corporate job to live a life of stress free squaller with better health. I created cheap natural onion hair mask that I share with anyone that goes to my you tube channel or blog. I keep my updates. Didn't feel like this was the place to share that, cause I know how bad hair loss feels, and I applaud those that do it with dignity. My psoriasis and arthritis went into remission as I treated the AA.

AA is still active for me I am just growing new hair as I am losing it. Patches fell out of my eyebrows and lashes the other day. They are already growing back. Hope this encourages you, and respect those at different stages of the journey. Honestly I must admit after twenty years I get a little tired of the fight. Sometimes bald does look cool, but I don't want that horrible arthiritis back.

Comment by Noreen Hashmi on October 31, 2012 at 5:45am

Hi
I've had alopecia for 8 years now, I am 40 years old and I noticed a patch after the birth of my youngest daughter. The patch regrew and then fell out again continuously for 4 years, but luckily it was at the back of my head and no one knew I even had it as I used to have really thick hair. 4 years ago I started noticing my hair falling out more than than usual, it got to the stage where I was afraid to comb my hair in the morning as clumps of hair would come off. I hadn't even heard of Alopecia and immediately thought I had cancer and was going to die. I became very withdrawn and couldn't focus on anything, I didn't want to go out or even meet people or attend any gatherings. Within 2 months I completely lost all my hair. I was devastated as you can imagine, why me? What have I done to deserve this? I've never done anything bad to anyone so why me? Does God really hate me that much? The worst of if came when my eyebrows and eyelashes fell out, I just didn't look like me anymore. I became depressed, and withdrawn, crying all the time, I couldn't concentrate on my home life or my children, I felt like I was living but not really alive. I even tried suicide, something which I've never disclosed to anyone. But I didn't even have enough courage to do that, when I thought about my children. I was at my lowest, my family were very supportive, my husband would always say you still look beautiful and I still love you, but that still didn't make me feel beautiful, because when I looked in the mirror I just saw this horrible scary unattractive person. Doctors gave me no hope, and told me the condition was uncurable. Although ive tried many treatments, sometimes the hair came back, but only to fall out again. The turning point for me came one day when my brother called me and told me that he was going to take me to meeting where I would get to meet other people who had the same condition as me, I didn't want to go, but he was persistent and encouraged and supported me. i wore a scarf to cover my bald head. We turned up to this room above a pub, and slowly to my surprise the room became full of beautiful bald men and women of all ages, some were wearing wigs. We were all told to introduce ourselves and talk a lit bit about ourselves and how long we had this condition. It was a really emotional meeting there wasn't a dry eye in the room, but that day was a turning point in my life after meeting so many people with the same condition as me, I felt I wasn't alone, some people had the condition from the age of 3, I felt that I had my hair for at least 32 years of my life, hearing other peoples stories really made me accept my condition, it has taken me 4 years, but today, when people ask, oh you have no eyebrows or eyelashes, I can say I suffer from a condition called Alopecia, I wear a scarf, so a lot of people don't even know I that I'm bald. I feel confident enough to wear a wig in public when I want to. Although I still have my down days, but I generally have more days when I'm happy and confident for who I am.
Noreen

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