Comment

Comment by Celia on April 9, 2014 at 3:35pm

April -there are several ladies who have suffered with FFA for many years.  My understanding is that - whilst FFA may appear to 'burn out' - the condition is liable to start up again depending upon several factors.

This is great news for you about your treatment ! Are you still having hair loss generally - away from the scarred area ?

Someone posted several weeks ago that her derm had declared that her FFA had stopped, but I can't recall who that was ! Sorry !

Regarding the 2 year timescale your derm said he had read about, I guess he will have also said that the hairloss pre-burntout can measure many centimetres.

April, if your treatment is working and your hair loss is diminishing - DON'T get stressed out about the reduction in treatments.  Go with it.

The very fact that your derm has to refer to the findings of some literature underlines the reality that that this condition is really little understood and actually rarely encountered by the majority of dermatologists.

Keep us posted !

Comment by April on April 9, 2014 at 2:27pm

Hi everyone! It's been a while since I've posted: ) I just saw my derm today, he does believe that the xtrac laser treatments are working, since the condition of my scalp has greatly improved and my hair loss has been little to none.It's even regrow name little in some areas. I just looked at a picture of myself from a year ago and my scarred area is only slightly worse. So I guess it's safe to assume this treatment is working. Although now he is dropping me down to treatments only twice a month which is stressing me out somewhat, but he thinks I may not need so many treatments at this point. Praying my hair loss doesn't start up again. Anyhow , wanted to pass this on in case it helps anyone. Also, I have a question for anyone out there. My derm said the literature shows that FFA burns out after 2 years in most cases. Has anyones FFA burnt out??

Comment by Celia on April 5, 2014 at 6:17am

Good morning ladies.  I have posted on Anne's discussion re the use of anti-biotics.  I know there are many of you who read but don't post very often, but if you have a story to add on Anne's page then it could be useful.  Thanks !

Comment by MJ on March 31, 2014 at 6:08pm

A few weeks ago I posted a question on the CARF website stating that I would be unable to attend the annual conference, but was interested in knowing if there was any discussion of possible medical and environmental surveys for FFA. I never got a response. I too reaaly believe that in doing so, some commonalities might surface.

Comment by Celia on March 31, 2014 at 3:52pm

Hi Debs - I have thought for a while that the trigger for FFA is not the same for everybody otherwise it would have been very easy to spot.  The same is the case for other auto-immune diseases - rheumatoid arthritis isn't triggered by a specific set of circumstances for example.   Do you recall when we were reading that it was felt that this disease was generally seen in  post-menopausal women............not the case.   However I also think that the idea of identifying a common factor might be a possibility.  I agree that a couple of 'questionnaires/surveys' have been blunt  instruments  to be able to pinpoint anything worthwhile in terms of finding the cause. I am still off all meds apart from clobetasol. It's 5 weeks now since I saw a new derm - no results from blood tests that were to take a week - the thought was that there may be a reason for this that could be found from blood tests.....tried calling, cannot get through........

Comment by Debs on March 31, 2014 at 2:38pm

Hi Annie, we really need the researchers to take complete medical and lifestyle history from us starting with our mothers health and eating habits and medication they took before we were born. If they start at our conception and work forwards something might pop up and be a commonality. I have completed a survey but it was too general really.

Comment by Annie on March 31, 2014 at 1:32pm

Hi all, it sounds like several of us have had infections that have resulted in a course of antibiotics.  I've always thought maybe my severe ear infection might have triggered the ffa, but now I'm questioning the antibiotics.  Antibiotics have been widely used for more than 70 years, and ffa is a relatively new disease.  Is it possible that another drug in combination with the antibiotics plays a role? 

Comment by Meme on March 30, 2014 at 12:50pm

Hi all

Like Claire I had several courses of antibiotics for urinary track and kidney infections. Thanks for the advice on Ultimate Flora, will give it a go, nothing to lose.

Comment by Debs on March 30, 2014 at 12:49pm

ULTIMATE FLORA, CRITICAL CARE PROBIOTIC. 50 billion live cultures per capsule. Keep in fridge. Online in UK approx £18, you can find it on eBay and other sites.

Comment by Rita - Canada on March 30, 2014 at 8:38am

Yes C., Deb is taking the very one I found that fits my naturpaths recommendations.

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