Comment

Comment by LoriO on October 4, 2015 at 11:11am

When there was some discussion of Vitamin A playing a role in FFA, (can't be too low, can't be too high) I asked my Dr. if I could be tested just because I was curious.  Just got the results back and I am low on Vitamin A.  Has anyone else had this tested?

Comment by Let's Solve This on October 3, 2015 at 9:03pm

Interesting article, Anne Louise! I'm hoping and dreaming right along with you! I was diagnosed with FFA on September 1st after seeing my family doctor and 3 different dermatologists. I have an appointment on Monday with Dr. Olsen at Duke so that I can participate in the Duke FFA study. We have to figure this out for all of us and so that other women won't have to deal with this disease. We have so much to contribute in this world and we don't need to be distracted for one minute by this hair thing!

Comment by LoriO on October 3, 2015 at 8:55pm

Anne Louise, that is the most encouraging thing I've read so far!  I went down a rabbit hole reading about NAD+.  

I think I might just try this stuff called Basis made by Elysium Health. (for some reason I can't get this to be a live link.)

 http://www.elysiumhealth.com/blog/the-key-components-of-basis-what-...

Comment by MJ on October 3, 2015 at 7:23pm

I think the genetic component is autoimmune disorders, not baldness. I come from a long line of people with full hair well into their 80's.

Comment by Kristen P on October 3, 2015 at 6:51pm

It's not just post-menopausal Sad in Chicago. This started in me in my early 30s and there are no indications that I'm in/approaching menopause. There are several young people on this forum. It may have started showing in post-menopausal women, but I think it's reach is growing. 

Comment by Anne Louise on October 3, 2015 at 12:18pm

I was doing some reading on autoimmunity this morning and came across this.  I find when I'm despairing of this bizarre disease I turn to scientific research to give me hope.  Wouldn't it be great to find a cure in the next few years and be able to keep my remaining hair?!  I can dream...

http://hms.harvard.edu/news/new-discovery-regulating-autoimmune-dis...

Comment by Sad in chicago on October 3, 2015 at 9:41am

Hello.  I agree that there are many factors, but most likely any kind of baldness running in families.  My Dad starting balding very early in life and although he still had hair around his ears, it started leaving from front top.  My mother, always had fine hair, and still to this day does not have ffa, but certainly you can see her whole scalp through!  Listen, I hope there is a cure and I do hope they find a way to alleviate, but in my mind it definitely is post menopausal and family genes plus bad luck.  When I wake up in the morning and see myself in the mirror I could die it is so bad looking.  I have lost about 2.5 inches from hairline and 1 inch or so back towards and around ears.  As I have done, get yourself a couple of clip in hairpieces, get them styled to your satisfaction and go for it.  What else are you going to do?  Try to be healthy and see the best in life.  There are good days and bad days, but other people are battling things that are way worse.  I can tell you this as a cancer survivor.  I did not need chemo so I never lost my hair before and this came out of the blue and is beyond a shock.  But I am here!  If, in fact, we pass this along, it is sad, but how about passing along a hideous, terminal disease?  Wouldn't that ber worse?  And, if I had known this might be coming, then I could have prepared for it better.  Think of it that way for others done the line who may experience this in the future.

Comment by SandyA on October 2, 2015 at 7:33pm

Classical Anne - thank you so much for passing on the info although I am saddened how you obtained it. My prayers are with your daughter. I also pray that your feelings of guilt are totally wiped away and that you realize in your heart these things are totally outside of your control.

As I read the comments here about genetic markers and hereditary FFA, I am reminded about something. When I visited my parents last year (before being Dx'ed with FFA), I had noticed that my father's hairline had receded a good 2-3 inches around the entire perimeter of his head since the last time I saw him several months earlier. I just chalked it up to age (he is 82) even tho it was apparent it was not the typical male-pattern baldness (he still has his very thick bushel of hair on the top). Now that I know about FFA, his hairloss certainly follows that pattern. Oddly enough, during the time I had noticed this hairloss, he was also battling a very severe case of the shingles.

I am now wondering if men are not getting diagnosed b/c they merely attribute the receding hair line as "normal". That would certainly kick the whole possible hormonal link for a loop (although with all the younger women being Dx'ed it seems to already be in question). 

Comment by Classical Anne in NC mountains on September 30, 2015 at 12:48pm

Oh my goodness, Sally and Anne -- your comments are so sweet, and so very much appreciated.  Next time I get to see my far away daughter [the distance from the North Carolina mountains to Boston], I'm going to take a guarded good look at her hairline.  I don't want to worry her with that additional possibility.  But if there's any sign of alopecia, I want to help get her on the right track, right away.  Thank you all for your concern.  How lucky we all are to be part of such a caring forum of friends!

Comment by Anne Louise on September 30, 2015 at 10:26am

Classical Anne I so sorry to hear your news of passing on the carrier gene to your daughter.  I can imagine that you feel guilty about it, but you know you had no control over that, right?  Think of what you have passed on to your daughter: a beautiful legacy of love and wisdom, patience and humor.  I admire how you face the world with optimism despite all of your ailments.  I am sure your daughter does too, and she is a better person for having you as her mother.  Sending big hugs to you!!!

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