Because of the Lack of studies for Frontal Fibrosing Alopecia I made a Chart here

My Doctor says it's almost guaranteed that there will be no studies for the disease FFA because there's NO money in it.  If there are studies that INCLUDE FFA it's because FFA has to do with hair loss which is an issue that brings in a great deal of money.

SO!  I thought, why not start our own thing.  I started a spread sheet with some statistics and factors and only if my fellow Frontal Fibrosing sufferers are interested (it's totally anonymous) I could share it here (the ONLY forum I know of for this disease).

If we get 100 people or more, I will bring it to a reputable Hospital here in NY and see if we can muss some real interest to conduct an official study to help us.

It's completely anonymous.

I started it so it's easy to follow the format.

I might have to turn it from an excel doc to a google doc though.

https://docs.google.com/spreadsheets/d/1aeFfbgrTwmr0v-kWpWX0gSJk06U...

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Replies to This Discussion

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 DragonandFox on September 20, 2015 at 10:23am

Cubbie HOw are you doing?!

Permalink Reply by DragonandFox on August 11, 2015 at 10:28pm

Great guys!  I'm glad a few people are interested.

Can you see this doc?  I'm working on it right now to make sure others can edit it so you can add your info too.

Please feel free to add common lines to the list if they come to mind.

I had a thought today and I'm adding that one to the bottom of the list.

https://docs.google.com/spreadsheets/d/1aeFfbgrTwmr0v-kWpWX0gSJk06U...

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)

Permalink Reply by DragonandFox on August 13, 2015 at 6:35pm

Hi Chubbieblue.

excellent additions!  I think I added that feature yesterday, I'm going to look now to see if it worked.

:)

Permalink Reply by LoriO on August 12, 2015 at 2:00am

I can view but can't edit.  I just requested access through the site.

Permalink Reply by DragonandFox on August 13, 2015 at 7:02pm

hi LoriO

I see someone else has contributed to the form. I'm not sure if you have to make a request and then I approve it but I did check something that says "anyone who can see the link, can edit"

Can you?

Permalink Reply by LoriO on August 14, 2015 at 12:20am

Yes, I filled it out.  I also got a notice to edit it again when more questions were added.  Thanks!

Permalink Reply by Dyners on September 30, 2015 at 9:16am
Guess I'm not very techy! I can see it but when I press edit it takes me to google sheets then I can't find it! Definitely doing something stupid but wondering can you guide me??
Permalink Reply by DragonandFox on October 1, 2015 at 4:50pm

hi Dyners.  I see that columns O-Z are still free on the sheet.  if you can get to one of those columns and fill it in moving down per the questions in the "A" column I can edit any typos or if it needs to be moved from a Y column (for example) to the current empty "O" column.  the "A" column is locked so you can see it no matter what column you're in.

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