Alopecia World
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- Blog Post: Bowling ball size hair ball!
Should I or shouldn’t I that is the question.
I am going back and forth on weather or not to take my P.U.V.A. treatments again. Let me give you some back ground.
I have had AA for a…
- Added by Devin at 1:19pm on December 12, 2010
- Comment on: Topic 'The absolute best solution'
- r plan b, wear options for taking a break from wig wearing. Now onto the shopping for a wig... I narrowed my choices, simply by cap fit and wanting to keep my secret safe with only me. It had to look real. My insurance helped with one "prosthetic device", so Follea wasn't as costly until my second one. When u feel great in one, u will instantly know. Also, there r so many choices for body, straight, soft movement, natural slight body, wave, curly,etc. I matched my natural hair tendencies. If u pick a stock item, then it is possible that if something happened to yours a reorder could be quick. If u can't find the fit in a stocked item, a mold of your head can be taken with some brands so you can get the fit you want, but at an additional price. Perhaps u already know all this. A good atelier will help u, so find one who carries brands u want to see. I tried many cheaper brands, but they fit horribly, I have a slimmer head than most I guess. On to ur next question of attachment. I do not shave my head, my hair blends in with my Follea well. But then, I am thinning all over and therefore I have a different situation than u do. To shave is a personal decision. I used clips, and only 2 clips. My wig fit that awesome. If u r well advised in a wigs care and take precautions to minimize damage to it, a great quality system will outperform the cheaper systems. Just a lot of random thoughts, really... I understand how u feel. I was frustrated about choices near 4 years ago. I promise, u will feel better once u have some purchased hair that makes u feel like yourself again. The right system will give u your life back. Other than the stress of losing your hair, did u go through anything else stressful leading up to ur hairloss in the last year? Minimizing stress is so important. Find ur inner strength and hang onto it. Remind yourself every day to give thanks for the things u do have. Envision peace, & de-stress - u decide ur future outlook and focus on it. U r important to a lot of people, and important to all of us on AW.…
- Added by PoodleHouse at 11:17am on May 9, 2012
- Comment on: Topic 'Just diagnosed....feeling very scared'
- y head as well as a few quarter sized spots around the scalp. I tried all of the treatments offered by my dermatologist (shots, creams, sprays, etc.) and all I ended up with was a medicine cabinet full of a myraid of drugs to treat the side effects. It was extremely frustrating. In the end, I gave up on the medical route since it was just making me sicker and sicker. I would like to recommend that you do some research to see if there is an herbalist in your area. I went for something called a Meridian Stress Assessment, and basically what it does is identify what vitamins and minerals your system is lacking in order to get you balanced. Then an herbalist can provide you with what is needed to get you back to normal. I did that and after 4 months of treatment I had my hair back (it was short, but I had hair). The only pitfall of that approach is that it can get quite costly since it's not covered by insurance. When I couldn't afford it any more, I gave up and started buying wigs. Today, I have a spot roughly the size of a half dollar on the right side of my head that is bald, and several thin spots at the hair line. I can't seem to grow my hair longer than about 3 inches or it starts to fall out again, so I simply gave up and wear wigs. I've found the wigs to be a lot of fun. There are literally hundreds of styles out there, and you can experiment with color as well. I have a lot of fun with it, and now have roughly 20 different wigs (different lengths, colors, and styles). Most of the synthetic wigs are cost effective, and they don't look like fake hair at all. I've come to terms with my condition, and instead of feeling bad about it, I try to inspire others. There are a lot worse things out there than losing your hair, and most people have no idea the hair I "wear" is not my own. I get to reinvent myself every day, and I now feel more confident and have more self esteem than I ever have before. Don't ask me why, I don't really know. I guess I was just lucky that those who know me have been very supportive and stand with me when I try a new look. It has become a lot of fun for everyone I know. The best advice I can give you right now is to learn to embrace your inner beauty, that's where your true beauty lies anyway. If I can offer any help, please feel free to reach out to me.…
- Added by Patti Clum at 11:51pm on July 21, 2012
- Comment on: Topic 'AA and hair follicles'
- . I sometimes would feel like no one cared, because the didn't seem to acknowledge the severity of what it was doing to me. I get it!! I've tried to think about it from their point of view, and I'd like to think that those closest to us just want us to not think it was a big deal, because they don't feel differently towards us just because of our hair. I'm just now facing the fact that I will more than likely be wearing wigs for the rest of my life, something new to me, and unusual for someone who has had this for ten years. I got a pretty great hair replacement, it's not perfect because it's not growing out of my head, I can still get upset at bedtime when I take it off, because there is my newly bald head, but most of the time I feel pretty good about it. Don't beat yourself up over feeling sad and angry over all this, we all have bad periods, the day after I buzzed my head I went into my doctor for a letter for the insurance and sat there and cried, she was great and explained to me, although I was so happy the day I got my gripper, on day two I was hit with the fact that my hair was gone, and every day I would be putting that on. How does your husband feel about you wearing a wig? How do you feel? Are you at the point where you need one? I'm praying for you too! You will get through this! God is good, and if you ask him for strength I believe he will give that to you. I'm here if you want to talk, you can PM me if you want. Christine…
- Added by Christine at 3:21am on October 13, 2012
- Comment on: Blog Post 'Giving a speech about alopecia at conference'
- ligion, love, dating and marriage with this unpredictable AA (d) the decision to shave (e) that it changes how you have to approach the world differently once you realize your hair will not grow in anymore (AU), including choices in sports, fashion, judgmental employers/spouses/friends/public (f) taunts, wig sabotage and rude comments in public (especially for children) (g) assumptions that you are dying of cancer/endless, repeated questions to interrupt your day You could have willing volunteers wear bald caps, spotty bald/hair caps that simulate AA, or bad wigs bought on a restricted budget that are waaaay different than, say, the Toastmaster's original hair. Then role play scenarios...date, job, shopping, reunion, school, etc. You could have them imagine what would happen if they had just received news that there is no known cause or cure, then have to tell an overbearing parent or love interest...or decide how to return to school. Bringing it personally to audience members will really make the point, and will bring it from a chart (which you could duplicate on a handout so they could see it and read later) right to their own tables. Having them realize it COULD happen to their own family members or themselves would really make them walk in your shoes mentally for an hour. You could even play the dermatologist giving them each the news based on the hair root, appearance of bald spot, fingernails, etc....they could close their eyes for that part. When they open eyes, they will have to face the world with this new knowledge. Walk them through the treatments, success rate of treatment, possible AT or AU over a lifetime, having to attend life events and make choices beyond curling one's own hair. Then tell the choice you made, briefly, and that if it happens that their own genetics reveal themselves this way some day (have research handy), you'd be glad to help. Or offer up www.naaf.org and www.alopeciaworld.net as resources. Good luck! ..Comment…
- Added by Tallgirl at 8:20pm on October 4, 2010
- Comment on: Video 'Will Smith Slaps Chris Rock after he jokes about Jada's alopecia'
- ake you feel small because of it. Think about kids who hear this and think, "I'm not going public because if I do, someone will make fun of me and people will say, 'you poor baby!' to your bully." And that the person who did wrong apologized and gets cr@p, and the person who caused the incident in the first place gets sold-out shows. And once again, CR wrote "Good Hair" BECAUSE his DAUGHTER asked why she couldn't have good hair. At least she has hair - there are parents on here who can only wish their kids were so lucky! And once again, if Black men and other people are going to go on about "protecting Black women," what CR did wasn't it. He stripped a woman bare by ridiculing something she has no control over in front of the whole damn world. And the producer, who is Black, also has a part in this. He and his camera crew CHOSE to keep the cameras rolling. So much for protecting Black women. And while we're at it, the Academy can also miss me with this whole concern about their image in this. On top of the "Me, Too" movement: John Wayne had to be restrained from attacking a Native American woman on stage simply because she asked that her people not be represented the way they were, and made racist comments about Blacks, Native Americans, and the LGBTQ community in Playboy. His estate still has his Oscar he won. Hattie McDaniel had to sit by herself when she won the Oscar because Black people weren't allowed to sit with white people. Jada Pinkett Smith has more money and power than any of us here. She doesn't have to worry about how much it's gonna cost to find a wig that "makes her look normal" because insurance won't pay for it. She made a choice to be open about her AA and not wear a wig, and for that CR tried to make her and women like us feel small and insignificant and exposed. Look at it this way: Sunday was "Carrie" without the pig's blood.…
- Added by Dollhead at 6:45pm on March 31, 2022
- Comment on: Topic 'Xeljanz (Tofacitinib Citrate): My experience on the trial'
- ing me a little nervous but I'm hopeful as she's gotten it through before. Update: 1. Growth on scalp slow and steady. (pictures attached) 2. Eyebrow and eyelashes major growth! So happy because it really brings back the balance of my eyes. 3. Still shedding but not as much. Still hairs on my pillow. I jokingly told my cleaning lady to start collecting them to make me a wig should I ever need it. Symptoms: 1. No sinus, colds or anything like that. 2. Weight gain. It was just winter. I can't honestly say I didn't gain a little but I don't believe it has anything to do with Xeljanz. These 5lbs extra I'm carrying is purely winter weight. I can make a better assessment come May-June 3. Slight headaches but I'm also doing a high protein diet for the last few weeks. That could be it. How I got the medicine: Co-pay card. It got me 3 bottles. I'm on my last bottle :( 2 weeks left and will have to probably pay out of pocket until insurance approves. Other Treatments: Minoxidil 5% 2x a day (when I remember or can be bothered. Sometimes I rush out of the house and am like, eh, screw it) Finasteride (propecia) daily Biotin, men's multivitamin that I've always taken since before Alopecia No specific diet. Hair be damned. I love my pizza, my wine, my occasional sweets. I'm not giving that up. Exercise. I exercise 5x per week. Running or weights. Cortisone shots: We skipped them this month to my disappointment. Reason being, while insurance looks over my case, we don't want them to say that the shots are what are solely creating growth. Pictures: Attached is a picture of my eyebrows/eyelashes. Really happy about this as it's tough to cover that up. I think in the summer I pencilled in a littttlllee bit of they eyebrow and friend lovingly made a joke about it. I never repeated that again! haha! Back of scalp. Here is where the tough spots are. I had a HUGE bald streak which is getting smaller and smaller. I put a side by side so you can see the progress from Feb 20 to Mar 26. Big improvement. Lastly, SMILE right now. Everyone! Alopecia is tough but we're all tougher. Do you, be you and be happy! Whatever and however! Good luck my fellow Alopecia warriors! Update you in a month! …
- Added by IcarusAlopecia at 11:11am on March 26, 2017
- Blog Post: A New Beginning
- Hi everyone! So yesterday and today were HUGE days for me! I met with Karen Peterik of Freedom Wigs yesterday, and she was absolutely inspiring! She has such a positive attitude and carries herself…
- Added by Natalie at 10:36pm on April 18, 2009
- Blog Post: The truth about wigs and cuticle lock: I need evidence for full refund
I have been ordering my extremely expensive European processessed human hair wigs from the same salon for a couple of years due to my extensive alopecia areata that has left me virtually…
- Added by Dominique Cleopatra at 7:34pm on March 9, 2013
- Comment on: Topic 'Is this temporary or what?'
- ouldn't understand why my hair was not growing back in certain spots in my scalp. And, two, No matter how I try, I comb it a certain way and still have a little bit of a spot showing. Still that way now that I kee it real short. Almost like a man's cut. Its so short. I am able to live with but it is unbearable that one I had to renew a dialaride card since I am blind and they made a mistake and put male on the paperwork. And, it was embarrassing to me. And, I can't really wear wigs in this heat since I sweat a lot. I have a lot of work ahead of me. I didn't really do anything about my hair loss till Mar of this year. Now that its july going on aug, I feel unsure this stuff they keep injecting in to me is going to work. Also, he started with injections in my hip area then last month the scalp injections. I continue to use the solution. He gave me some sample of some other stuff that was supposed to help stimulate the groth faster. My insurance won't cover it so ran out sooner. And, went back to the solution I originally started with. Portia…
- Added by Portia Mason to California World at 1:03pm on July 30, 2009
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