Alopecia World
www.alopeciaworld.com
AU concerns
I am 26 and I lost ALL my hair about 10 months ago with no previous signs of any hair loss. Since then I have tried different treatments but in the end- every dr says something different. Within the last month I have started to get hair growth on my scalp, arms, pubic area and legs. A lot of the new hair comes and then falls back out (but some has stayed) My eyebrows and eyelashes haven't shown any sign of re-growth. My husband has been great through all of this but I still haven't been able to accept it completely. Affording a good wig is near impossible right now. Is there anyone out there with the same situation who has had luck with treatments? I have had drs tell me this is highly stress related but I never feel stressed. They tell me I keep my stress locked inside and that is my issue. I hope writing this and knowing I am not the only one out there with this issue help in the end. Good luck to everyone out there dealing with AU!!
Replies to This Discussion
-
Permalink Reply by BaldGirlsDoLunch.org on
-
Hi Jamie -
We're getting women with alopecia areata together in San Diego on July 16th......hope you can join us. Invitation attached. Meeting other women was the first big turning point for me when I had a new diagnosis. Being able to bounce my thoughts and feelings off other women was pivotal in conquering the isolation I felt at first. Self acceptance is a process, so be sure to be gentle on yourself.
There are treatments that can grow hair in some people, but they have risks and side effects and do not prevent against future hair loss. They can be costly, time consuming and are not available from all dermatologists. Even in those who try route, there is only a 40% rate of success and once treatment is stopped, the hair is lost. The NIH has a good summary of treatments which you can read online or order for free (our tax dollars at work)
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)… go to the website of NIAMS and filter for the Alopecia Areata patient booklet. I have most of it reprinted on the Treatments pages on our website.
If you like even more detail on treatments from medical journals, I've cited the most comprehensive published treatment overviews here.
Invite is attached and posted also in the UpComing List at our website. I have also just uploaded a brand new FAQ about Bald Girls Do Lunch which answers many common questions about our events. Check our photo gallery and testimonials.. Our motto is eat, talk share.
You're absolutely not alone and so glad you found this community of people who truly understand the same challenges. But going to doctors and trying treatments as most of us have at one time, does create a feeling of isolation and is discouraging because treatments are very limited. There are millions of people ( men, women and children) with many forms of alopecia areata ..approx 1.7% of the US population has a life time risk of having some form. And while most are transient and resolve to normal regrowth within year, a very small percentage have stubborn hair loss that does not regrow or regrows abnormally. Not knowing what will happen to us individually is a hard part of the equation.
I hope you can meet with us in your area. It's a wonderful group of women I know you will enjoy getting to talk to.
Thea,founder
BaldGirlsDoLunch.org - Attachments:
-
-
SanDiego071609.pdf, 239 KB -
About_BGDL.pdf, 269 KB
-
-
Permalink Reply by wael saad on
-
Hi Jamie,
i will be 27 years next october and i have AU for more than 10 months now. i think we both will celebrate alopecia birthday in the same month :)
stress is one of thousands reasons for alopecia, so u have to enjoy ur life more and avoid stress in work or general activities. alopecia itself maybe making stress for now so dont let it destroy you. u have to accept the fact u have been chosen to live an experience few ppl have the chance to. it will show you who is ur real friends, ppl supporting you deserve to see ur smile.
alopecia made me stand for a minute, watch the short past and trust god in the future coming. god want to see how will we accept his destiny.
my advice is dont lose hope and dont go far with medecine, put limits that wont hurt ur health.
-
Permalink Reply by Jamie on
-
Thank you so very much. It is definately nice to hear people talk who truly know what I'm going through. I have massive support from my family but I know that they dont understand 100%. I need to try and live life the way I normally would and being able to talk with different people may be the 1st step. Thank you!
-
Permalink Reply by Jill on
-
I'm sure that stess can cause hair loss. However because a person is losing their hair does not mean they must be stressed about something. Unfortunately sometimes this stuff just happens and you may never know why it happened. Good luck with your treatements.
-
Permalink Reply by Cheryl on
-
Hi Jaime
My husband has been great thru my AU as well and it has been 6 years. He has held my hand with me for scalp injections, laughed at me when I tried the "rubbing an icecube on head" thing, and told me to try whatever I wanted to try.
I have had only bits of regrowth but right now I have the stupid pubic hair and tiny bits that you reallly gotta look for on my arms and legs. I have a bit of kinda baby fuzz on my face and really all over. Best thing is... some eyelashes!!! I use a brush on conditioner stuff I got on EBay ..the brand name I think is Mavala.
So.. I guess I am sorry to tell you that I have not had success with traetments myself. They sure do exhaust me with the hope and then disappoint. Perhaps you will get to a better place of acceptance too.
I think if you are regrowing some in some places right now... that could be an excellent sign!
Smile...it might help it grow more and faster!!! ;)
-
-
ps jaime the past 6 years I have had some great up and some yucky downs... IMHO stress does not do it for me.. I can be major stressed and get some regrowth... and I was no where near stressed when it had decided to go. I think alopecia has a silly stooopid lil brain and has no feelings and just does whatever it wants... again, just my humble opinion...
-
Permalink Reply by Sam Reid on
-
Hi Jamie,
I'm 28 and showed my first signs of alopecia a year ago. Before that I didn't have a clue what it was. I've now gone AU and am looking at treatment options myself.
So far I've tried DCP and prednisone, and at the moment I'm looking into using a prednisone/Imuran combination long term (1-2 years). I found that the DCP was too irritating and I had a bad reaction or two to it. So I stopped that. The prednisone worked the first time I used it, but after stopping the regrowth fell out. The second time I went on a course of it I got very little regrowth. I'm not sure about the prednisone/Imuran treatment. Since it is meant to be a long term treatment, there are a number of risks and side effects that are possible, and I'm just not sure it's worth it. But I'm researching it at the moment and will hopefully make the right decision.
I haven't really accepted it completly myself. I've come to some level of acceptance, but I still think about it a lot and am quite self conscious in some situations. But compared to the beginning I've come a long way, and I guess that as I continue on I'll only come to terms with it more fully.
It's great to find people out there who are going through similar situations. Good luck with it all....Sam
-
-
Hi Sam-
I agree....this condition takes time to get use to. Adapting to a changed self image is not instant and least of all we don;t need to expect ourselves to be on any timetable.
Go easy and at whatever pace it flows. Even after years once in a while there will be a new situation, but the inventory of personal experiences provides a big reservoir to draw from.
It's a growing, evolving process. Hang in there! And keep us posted.
Thea
baldgirlsdolunch.org
© 2024 Created by Alopecia World.
Powered by
