Replies to This Discussion

Permalink Reply by Mildred on August 11, 2015 at 9:19am

Your doc is wrong on this.  There is a study being done at Duke University in North Carolina.  My dermatologist who specializes in hair loss treatment gave me this information.  I can call and get the exact information about this again.

Permalink Reply by Alice on August 11, 2015 at 2:02pm

Mildred is right. Dr. Elise Olsen is heading up a FFA study at Duke. I believe they are in the process of enrolling participants now, but ghe diagnosis must have been confirmed by biopsy.

Permalink Reply by Lo on August 11, 2015 at 4:17pm

Permalink Reply by Lo on August 11, 2015 at 4:21pm

I do not see an attached document. I'd be happy to fill it out, though. Even with "formal" studies going on, it certainly wouldn't hurt to compare notes with those on this site (even if it is just a few women who participate). I did ask my derm about studies going on, and he did say there were minimal (if any) research dollars dedicated to FFA, mostly because it is somewhat "rare", and not life threatening. There are some studies, as folks have already mentioned, but my guess is there aren't a ton - and that funding is low.

Dragon/Fox - if you want to email that excel doc to me at my personal email, I would love to compare notes with you. I am also in contact with about 7 other women (outside of this site) who all have FFA, and would likely participate. My email is Lobertella@yahoo.com

Permalink Reply by Lo on August 11, 2015 at 10:40pm

It looks as if j can on my iPhone. Thanks!

Permalink Reply by LoriO on August 11, 2015 at 4:39pm

I would gladly fill out your spreadsheet because I've had the same thought.  There must be a lot of commonalities between us.  There is a study being done (or about to be done, I'm not sure) by Dr. Miramani at Kaiser in Vacaville.  My Dr. was going to try to get me involved, but apparently I have to wait to be invited or something.

Permalink Reply by cubbieblue on August 11, 2015 at 7:49pm

I'm anxious to see your document D&F.  I tried to start this conversation a little over a year ago (see topic "What Do We Have in Common" 6/2/14).  A few months after I wrote that, I was diagnosed with cancer so I was preoccupied with other health issues and never bumped the topic.  I would love to figure out why this formerly "rare" condition is on the rise and if there is anything we can do/not do to help stop its progression.

Permalink Reply by Classical Anne in NC mountains on August 28, 2015 at 6:00pm

Cubbie, I'm so sorry about your cancer diagnosis.  I do hope your treatments have gone reasonably well, and that your spirit is at least a little relieved by now.  As for Cubs and Red Sox, I don't have anything nice to say this season!

Permalink Reply by cubbieblue on October 17, 2015 at 12:19pm

Hi there Classical Anne!  Thanks for the good wishes.  I finished chemo and radiation and now I am on daily hormone therapy for at least five years. My hair is growing back in -- but only the hair not affected by the FFA.   Now that it is growing in, I'm a little shocked to see just how extensive the FFA is.  It's back about 3 inches at the temple and 2+ inches everywhere else.  And although none of my doctors relate the breast cancer to the FFA, in my mind it's not much of a stretch to think that my immune system trying to fight the cancer might have triggered the FFA.  It's a shame so little is known about the triggers.   Take care and GO CUBBIES!! :)

Permalink Reply by Classical Anne in NC mountains on October 17, 2015 at 12:58pm

Hey Cubbieblue!  I'm happy to know your progress with the cancer treatments.  Congratulations on finishing the hard part!  I can just imagine your shock at the moving borders of your FFA.  I agree that your body's desperate attempt to fight the cancer could have set off autoimmune issues elsewhere.  Hopefully some ongoing studies will provide answers.  

How did you handle your total loss of hair during treatment?  Have you gotten accustomed to wigs, or are you the queen of stylish hats?  Your journey can have a real impact on this forum.  And I must concede -- Cubbies indeed!

Permalink Reply by cubbieblue on October 17, 2015 at 2:00pm

Yes, being past the hard part of cancer treatment has me turning my attention to FFA issues again.  I have 5 or 6 "lone hairs" near my original hairline, then a great vast of shinny smoothness, but a pretty good crop of varying shades of brown and grey at the top, crown and nape.  One of the chemo drugs I had can cause permanent hair loss in a small percentage of people, so I am thankful it grew back.  I never got comfortable with the wig, so I mostly went with hats, scarves and wraps.  Hope you are feeling well and you are managing your health issues comfortably.  Take care!

Permalink Reply by cubbieblue on August 11, 2015 at 11:08pm

D&F I can see the document but cannot make changes.  It says I can only view the document and must ask the owner for edit access.

I would consider adding categories for

1) exercise habits

2) alcohol use

3)  weight in general:  above average, average or below average

4)  Origin or Descent (I've heard that many afflicted are of European descent)

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