Comment

Comment by Liz on September 30, 2015 at 1:25am

Hi MnM. I have FFA as does my mum. There is 31 years between us in age but only about 2-3 years between the times we both showed symptoms of FFA x

Comment by sallylwess on September 29, 2015 at 10:09pm

Classical Anne, I am so saddened to read of this genetic predisposition that has shown up in your daughter.  My sister is suffering from so many autoimmune problems, as is her daughter.  We have psoriatic arthritis in the family.  I also watch my daughters' hairlines, but I never say anything.  I know they are so worried that my fate will be theirs.  Thank you for telling us antigen marker.  I will ask my doctor about it.  Blessings to you and your daughter.  

Comment by MnM on September 29, 2015 at 10:01pm

There is definitely some combination of genetic and environmental factors that attribute to autoimmune disorders. My mom has FFA as well, however, I developed it at a much younger age than she. She actually didn't realize she had it until after I was diagnosed. I'll have to ask my doctor about this gene, I have a young daughter and baby on the way, so this is definitely a concern for me.

Comment by Classical Anne in NC mountains on September 29, 2015 at 6:19pm

Thank you so much, Natalie.  Your curly-headed daughter is adorable!

Comment by NatalieW on September 29, 2015 at 5:06pm

Oh Anne that is so hard. My biggest fear is that I will have passed this on to my young daughter. I watch her hairline as closely as I watch my own! Sending you a hug across the oceans

Comment by Classical Anne in NC mountains on September 29, 2015 at 7:34am

I have just learned that I passed a carrier gene to my precious daughter, and she is now battling some significant issues.  I wanted to call attention to this particular antigen marker, HLA-B27.  A percentage of people, possibly as high as 20% of the general population, carry this gene -- but the majority are SILENT carriers, and do not develop any of its challenges.  Unfortunately, that has not been my case, and now my daughter is affected as well.  It is a genetic predisposition to develop certain autoimmune diseases because of a gene alteration that affects our immune systems.  Diseases include ankylosing spondylitis, Reiter's syndrome, inflammatory bowel disease, interstitial cystitis  and psoriatic arthritis.  It can also be related to connective tissue disorders, such as Reiter's syndrome, uveitis, and alopecia areata.  My daughter is now experiencing ankyloarthritis in her hips and knees, as well as symptoms of Crohn's disease.  She is 38 and the mother of a very active 5-year old.  You can scarcely imagine my hurt and sense of guilt at having passed these miseries on.  I only bring it to this forum for the sake of any others who are dealing with multiple significant autoimmune diseases.  There is currently no means of correcting the carrier gene or preventing its possible outcomes.  But I do believe it helps to recognize and understand it, so that you can seek proper treatment, early on, for any of the diseases which could develop.  But let me say again, it can be simply silent.  The majority of folks who have this antigen marker, HLA-B27, do not actually develop any of these problems.  I should also point out that a very large percentage of healthy women develop thyroid disease at some point -- that is NOT an indication of this gene.  The carrier gene is identified by a specific blood test, usually ordered by a Rheumatologist, though your primary physician should have access to the same criteria.

Comment by Mel on September 27, 2015 at 6:39pm

I agree there seems to be a wealth of knowledge among the women here! It is confusing, too, on how common this really is. My dermatologist initialy described it as a rare autoimmune disease. But the second time I saw her she and her aide said they see more and more women diagnosed with this all the time. That seems weird. ...On a separate topic, I think someone may have asked if the shots do any good. I only did one round. I'm too afraid and my hair seemed to fall out faster so I did not do it again. But they described one woman to me who lost a full 5 inches and, while they say the hair loss is permanent, the aide told me that with the injections they got a full inch to grow back. ...So many questions...
I do take some comfort in this forum and knowing there are others dealing with the same fate and trying and hoping to find answers.

Comment by Classical Anne in NC mountains on September 27, 2015 at 6:03pm

Mel, thank you for your very informative response.  It is good for all of us that you can speak from the EPA point of view and share your experience.  In fact, it's quite impressive just how intelligent and informed most of the women on this forum are.  When I was first diagnosed, and my successful and busy dermatologist said that she had never encountered it in anyone else, I did take just a little comfort at being special. And  from the various sites that implied this was a very rare and new phenomena -- it was one more affirmation to the fact that my family calls me "one in a million".  In combination with the statistics on several of my other autoimmune issues, it does compute to very near one in a million.  So I guess I still wear that as a sort of purple heart badge.  But the more I read about FFA, the more I had to question the initial theory that it was a disease of white, educated, affluent women.  Realized that that is a description of the simple majority who have actually sought treatment, not the great numbers who did not, or who were misdiagnosed or simply medically dismissed in the past.  I am so sorry if that burst your bubble.  But, there is a certain wisdom in the "misery loves company" theory.  After all, each of us on this forum -- without wishing to spread the misery -- have taken comfort from the numbers of thoughtful and encouraging members we now think of as friends.  

Comment by Mel on September 27, 2015 at 3:17pm

Interesting, Classical Anne. I think I took comfort in the idea that this may be "new." But you may be right that this condition has been around for a long time. Such a bummer.
As for microwave popcorn, while it probably is not tied to FFA I wouldn't touch the stuff. They say consumers probably would never breathe in enough of the chemical in the butter flavor to cause "popcorn workers lung" but it the bags are lined with another chemical that's a likely carcinogen.
I work for the CA EPA so I see a lot of enviro-type documentaries and I also steer clear of plastic. I AM still using Saran Wrap, though 90+% of plastic wraps contain hormones and can disrupt hormones. Mostly I try to store all food in glass. I buy the wide-mouth jars and got some glass food storage jars with silicone-lined glass lids at Target, which are helpful. I haven't used parabens on my body for years now. I really try to be natural... I just saw another film about how our cleaning products can disrupt our health and I'm wanting to switch to natural, which can actually be CHEAPER, just not a quick leap to make. But I am thinking of storing them in containers so at least the fumes aren't getting out into my home.
So, while most people may not think a thing about this stuff, I do think all these chemicals in our lives are new, and not something generations past really dealt with. It's effecting people's fertility, women and men. Who knows what else.
I do have autoimmune in my family, so maybe this was just my fate ...

Comment by Classical Anne in NC mountains on September 26, 2015 at 9:26am

MJ, great summary of clues -- I'm never that bright so early in the a.m.!  I do think some of those factors we have in common might just get the ball rolling.  And because more of us have used more of those products recently than ever before, it may seem that FFA is a new disease.  But I have no doubt it's been around for ages -- it simply wasn't identified and given a specific diagnosis until recently.  A few here have mentioned that their mothers' have apparently had it since well before the 1990s.  And if you study the hairlines at any gathering of Seniors, you find examples everywhere that never sought treatment or diagnosis --  many folks of the "old school" that tended to downplay symptoms that they thought of as natural aging.  And certainly the average age of 'victims' is in the upper digits.  But I think the condition existed much further back in history -- take Queen Elizabeth the First, for example!  Her head was bald and smooth back to a line from behind each ear.  And she probably was not alone, just one of the few faces of that century whose portraits still exist. Who knows how many cases before the age of affordable photography?!  And affordable medical care, for that matter -- generations past simply did not have the access to medical care that recent generations have appreciated.  If you read some of the technical medical treatises on the subject of the modern phenomenon, you'll note that they do not consider it a brand new condition.  It simply never had official diagnostic criteria, or a name, until the 90s.

Of course we may or may not take comfort in seeing it as an age-old condition, though they do say "misery loves company"!  I'm just so sorry to see it becoming more common among younger women, and that truly may be due to any or all of the factors you named this morning.  But, oh no!  Are people really pointing fingers at microwave popcorn?  Please, oh please, do not let them take that away from me!

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