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Comment by Hudson on May 15, 2013 at 6:48pm

I've never written a post before, only ever read them, as I was concerned I may say the wrong thing, however, I wanted to encourage you. I'm married, with a great husband and 2 teenage daughters who have supported me from day one. However, even with all their love and encouragement, the realisation was that in fact, it was only me that could get through this, day by day. No one can do that for you. So I took it on the chin as best I could..!.... I took the approach to be very open about it. I also decided to let nature take it's course and didn't see any specialists. (Though low ferritin levels have been linked to Alopecia and mine were low, this is not the same as iron levels apparently) -- I now have thick dark hair growing daily, covering 85% of my head. I have been using natural essential oils, rosemary, lavender blended with some others,for over a year, massaged onto my scalp each night, to encourage hair growth, using aromatherpy shampoos, with rosemary and nettle extract and also having regular healing massages on my body and head, including reflexology and Reikki (Taken up yoga too, over the last 3 years). My condition, I'm pretty sure, was stress related and it was almost like a 'switch' had been turned on, which in turn started my hair loss. My stress has now subsided somewhat, which I feel has enabled my body to start healing and my hair start growing though I know I'm not out of the woods yet as my eyebrows are 'twitching' this week - But all in all I've lived with this condition for the last 6 years and I've coped - and you and your family will too --- my advice is roll with it as best you can,I found the more I talked about it the better I coped and my family coped, as it wasn't a taboo subject. We've even laughed about it on lots of occasions - I hope I haven't sounded patronising, but wanted to offer you my best wishes and let you know that many of us have walked and are walking the same path as you and there are success stories out there, together with lots of support available to you,

Comment by AK13 on May 15, 2013 at 9:14am

So far I still have a lot of hair, but I can tell how thin it is becoming at the temple and how big the spot is behind my ear and new spots along my hair line. So far it is only my hair.
My husband came home yesterday and told me he told one of our friends. I was upset, but he needs someone to talk to. I understand and I want him to have someone to talk to too. I am not ready to tell people yet though. My husband is great and very supportive. He is doing everything he can but he doesn't know what to say to me, to make me feel better.
Just wondering if anyone has registered with the alopecia registry? I saw they also have clinical trials, but I don't think that is something I want to do.
Thanks for welcoming me. Lexi and Cokeman

And Lexi I agree it is comforting, even though I wish none of needed to be here

Comment by Cokeman on May 15, 2013 at 2:21am

Hi AK. I was in a similar situation where i had just enough hair to cover up the neck and above the ears. When it got too hard to hide, i had to bite the bullet and shave it off. So far I have still not gone all the way into AU, even though i have resigned myself to the fact that it may happen in due course. I have probably about 30% of hair left on my head, but have had some recent regrowth on one side. I have lost all hair on my chest, legs, arms, but have for some reason kept all of my facial hair so far, which is a blessing i know. Its also funny, i have smoooth as silk legs but my knees and feet remain hairy, and so do my fingers and netherregions!. I decided in myself to not let it bother me, and have not sought treatment for the condition that we have. The reason being that the fact is there is very little hope that treatment will bring any change of luck. I would rather carry on and hope for the best rather than be repeatedly disappointed by treatments that wont work, I believe that by carrying on with my life and keeping fit and as stress free as possible, I give my body the best chance to recover. Ive also got an amazingly supportive wife who has never ever said anything but positive things about my condition. She goes a long way to helping me through it. Feel free to keep posting on here AK, I look forward to hearing about your journey with it, and good luck!

Comment by Lexi on May 14, 2013 at 8:38pm

Welcome AK13. It is comforting to know we are not alone in this, even though we surely feel that we are. Be strong.

Comment by AK13 on May 14, 2013 at 4:39pm

Hi I am new here. I will give some background. My brother was diagnosed when he was 10 with alopecia and it turned into AU. He has tried treatments but nothing ever worked. Fast forward 23 years and I noticed a spot in the back of my head. It slowly got bigger. I knew what it was but I was so afraid. Finally went to the derm. She wanted to do a biopsy but I figured why I knew what it was. Started with creams, and eventually started the injections, they were working great, and then all the new growth fell out. I am missing about 2-3 inches, probably more like 3-4" along the base of my neck. She finally did a biopsy last week and it is confirmed AA. Since then I noticed more spots, a larger one over one of my ears and a few smaller ones over the other ear. And a few around my temples now. From readi it seems like I have Ophiasis. I am scared. I watched my brother go through this and I know how scary it is. I have always had super thick hair and luckily it is enough to cover right now, but I am worried for how much longer. I love my dermatologist she is so sweet. I wanted to find someone who specialized in alopecia but really what can they do for me? I just started a ton of vitamins, I know it won't do much but feel like I am doing something. I was going to try going gluten free, but don't want to do too many changes at once. I am so depressed over this, and don't want my kids to see me sad. I am also worried will they get it. Glad to find the group.

Comment by Lexi on February 26, 2013 at 9:11pm

Thank you for your latest post, Cokeman.

Comment by Cokeman on February 26, 2013 at 12:27am

Hi all. Just thought i would pop in to update how my ophiasis pattern is going.. The hair on my head started to go so rapidly that i thought it was all going to be gone within the space of a couple of weeks. It then slowed to a halt and has only just recently started falling out again, albeit very slowly now. I shave it every day in the shower but there is still probably about 1/3 of my scalp covered now. One of my eyebrows began to show signs of falling out and then stopped again. I have every bit of my facial hair still for some reason... My arms and legs are basically entirely bald, my chest hair is gone too. It doesnt look promising in the long run i guess, but you never know. Hope everyones holding up ok and still enjoying life! Im not looking forward to losing my eyebrows or facial hair thats for sure, but until then i try not to worry about it. Im getting married next week and at least my eyebrows have held on for this long so i can be thankful for that at least. Take care all!

Comment by Lexi on November 5, 2012 at 7:39pm

Welcome to all my newest members of Ophiasis Alopecia. It is nice to see we are not alone in this journey. We all can relate to what the others are going through. Welcome all.

Comment by prairie9 on July 8, 2012 at 6:08pm

Hello all! I never knew that pattern was called Ophiasis until reading this post. All I knew is that I was diagnosed 20 years ago with Alopecia Areata.

Comment by Allison on July 8, 2012 at 11:01am

Hi Kristy! I just want to share my thoughts on your post. I have the Ophiasis pattern but never knew it had a name until a month ago when I stumbled upon it on the internet. I'm constantly researching and conducting experiments like a mad scientist! lol I also have bald patches scattered. I have been on various dosages of prednisone for 5 years and have had monthly cortisone injections. No real success. Not sure why I even continue with the prednisone. At my next dermatologist appt, I think I'm going to have her wean me off. (I've been researching various natural oils for treatment) My dermatologist always asks me what's going on in my life when my conditions worsens and each time I've had severe hair loss, it's been a stressful event for me. In 2007, I was in an intense Masters program which caused hair loss that was so severe, I could no longer cover it with my hair. I wore wigs for 3 months. With treatment and dropping out of the program, my hair grew back. Last year I had a hysterectomy and a breakup. 3 months later, the Ophiasis pattern developed with other patches and I lost eyebrows and lashes. The surgery was in March 2011 and the break up was May 2011. I was terribly worried about the surgery in February. My doctor told me that hair loss occurs about 3 months after the event. Based upon my research, it sounds as if stress and hormonal changes trigger Alopecia for me. It sounds as if your condition is sparked by stress as well. Now work is stressing me out! I see white hairs growing above my ears, just a tad bit. In the past, I was using lavender oils, drinking more water, diet and exercise to relax. The routine made me feel really good and my hair loss stopped. I think the stress of losing my hair is the stressful event. I just need to get back on my routine and hopefully my hair will regrow. I want to try yoga and also acupuncture as a method too since I read that both are good for stress. I've also tried scalp massages to circulate the blood to the scalp, still a work in progress......

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