Comment

Comment by Alice on April 3, 2013 at 10:15am

Thanks, Ellen, for posting the link to the article on LPP & toxic lipids. Although much of it was too technical for me, I did notice that it mentioned 'decreased sebaceous activity'. Now that I think about it, I did notice that my hair being very dry quite some time before I noticed the hair loss. Does anyone else recall this happening?

Comment by PamW San Diego, CA, USA on April 2, 2013 at 3:33pm

Hi, Ellen. The doctor that did this research is presently looking for volunteers for research. The link to volunteer is posted somewhere on this forum (it is not the Wake Forest study). It is through Kaiser, I believe. the drugsmthatbare mentioned in the research, Rosiglitazone maleate and pioglitazone, have black box warnings. One of them was actually banned in Europe and by the FDA. The other one is Actos, and does come with a warning, which is why docs are so reluctant to prescribe it. What I think is interesting, is that there was talk of developing a topical cream from the active ingredient in Actos, but I don't know whatever came of that. CJ, could you ask the dermatologists in your organization?

Comment by ElleMN, USA on April 2, 2013 at 3:03pm

I came across this article while researching toxic lipids. I thought it was interesting and some of you might want to read it. While it's not specific to FFA, it has some hopeful info on LPP.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2937154/

Comment by CJ- Christine from Ottawa Canada on April 1, 2013 at 11:05am

HI all,
Thanks Pam for the great explanation- it makes me want to find out more about Actos.
As for approaching people....I expect that most people would feel uncomfortable being approached.. because its a confirmation of their worst fears.. that others notice their hair loss. By saying something we confirm that whatever they are doing to mask or hide the situation, its not working. I have said to the folks I have talked to something like what Heidi said, but started out with... "I have a hair condition, called FFA, recently diagnosed and I find myself hyer-aware of everyone's hair line, which is why I noticed yours.. which most people wouldn't notice at all, and I could be wrong, but...have you got a good doctor you are seeing for your hair condition..?

anyhow.. this went over well, both times I tried...

Comment by Kath UK on March 31, 2013 at 3:32pm

Thanks, Pam, for that excellent explanation. It made things a lot clearer for me and I'm grateful to you.
My sympathy to Heidi who made an approach to someone and was snubbed. I think you were brave to talk to that other lady, Heidi, and I'm sorry she didn't respond well to you. I often see someone in my town who I am certain has FFA but have never felt confident enough to speak to her so I admire you for at least trying to reach out.
Happy Easter.

Comment by Simone NJ USA on March 31, 2013 at 11:14am

Hi Everyone:

Thanks for the explanation Pam...I am so grateful as well to be a part of this forum..it has made me feel I'm not a freak and alone. I have actually learned to accept it better as I'm doing whatever I can and all I can do now is hope for the best that it will stop one day and there will be a cure one day as well..thank you all on this forum for the helpful information, support and inspiration....Happy Easter...xxx

Comment by Debs on March 31, 2013 at 11:02am

Heidi, that must have been very upsetting for you. It is amazing though what poor social skills some people have, often at work I can ask a passenger if they had a nice holiday or some such small talk and they will give a very similar short answer and seem quite embarrassed to have been spoken to about what I guess they perceive is a private matter. So I think the lady at your gym would have been equally ill at ease if you passed a comment about the weather.

Comment by Heidi Short UK on March 31, 2013 at 6:33am

Happy Easter everyone! Pam I can see why you are a teacher, you explain things so easily, I'm the complete opposite, I make the most simple things sound complicated!! I'm finding it so hard to keep up with the conversations, I don't look on the forum for a few days and then have to read 4 pages of update myself! I can't beleive there are 52 members now, WOW! I think when I joined there was a handful of us.
Thanks for the phone number Debs I will ring them on Tuesday to ask for the survey. I'm a bit like you Debs regarding your attitude towards FFA, when I was diagnosed I was really down I can't tell you how low I felt, I cried all the time and felt ugly and so helpless. But now that I know its not falling out in handfuls and I'm not going to wake up in the morning with my hair left on my pillow, then to have found this forumn, this has become my therapy. I have someone to talk to no matter what time of day it is and having such a large group from all over the world gives me confidence that I am doing everything possible and I have the most up to date advise, more so than my own GP. I have become much calmer about my condition and it doesn't take over my life, its always there, but its not what I wake up to.
Jodie I used to smoke, but I gave up 6 years ago when I started going through early menopause at 43 years old! So wouldn't I have FFA if I was still smoking, I hope this is not correct as I would start again tomorrow!!!
CJ regarding approaching strangers, I go to a gym class and there was a lady there who obviously has alopicia and doesn't really hide it, but it was when I was feeling down last year, so I thought I would approach her to see if there were any support groups in the area. So after a couple of weeks of smiling at her, or saying hello if the chance came up I plucked up the courage to say something. I waited until we were outside and on our own and just said to her 'hello my name is Heidi and I was wandering do you have alopicia as I have just been diagnosed with FFA which means I will loose the front part of my hair, and I'm struggling to cope and I was wandering if there was any support groups in this area that I could go to? Wether she was embarassed that I had bought it up or just found it differcult to talk to me she just said ' no there isn't!' and walked off!!! I felt worse and rejected from a someone who was also sufferering and went home and cried in the shower! So beware that you might be not be welcomed with open arms!!!

Comment by Debs on March 31, 2013 at 3:42am

Pam, thanks for your usual fantastic explanation.

Comment by PamW San Diego, CA, USA on March 31, 2013 at 12:08am

The toxic lipids build up in our sebaceous glands which sre located deep within our hair follicle. The hair follicle eventually scars over as a way to protect itself from the attack and the hair can no longer grow. No one knows what causes the lipid to become toxic. It was thought to have a hormonal trigger (such as menopause). The latest research is showing that there may be a metabolic trigger, which is why Actos, the diabetic drug, was tried. Actos changes the way our bodies metabolize and affects our lipid function. Stress (physical like Celia's illness or emotional) can affect our hormone function, also. I am beginning to think that like other diseases, there is just not one thing that causes it, it can be genetic, environmental or metabolic. I think that is why there is no one treatment that works. Plaquenil is a disease altering drug, it is supposed to help our immune system with the inflammation. It doesn't get to what is causing the inflammation, which is why people still lose their hair while taking the drug. The only drug that has proven to stop the hair loss has been Actos, but it has a lot of side effects and has not been proven to work in all people. I can't wait to ask about the excimer laser.

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