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 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 DragonandFox on August 11, 2015 at 10:43pm

if you can provide us with exact information that would be great. 

contact number and email of who to contact. 

Also, I think it's difficult if it's one person in the US.  I know I can't make a trip to North Carolina right now.  but my Dr would gladly send records and it makes sense participants have to have had a biopsy.  Honestly, I'd think a biopsy was necessary for any Dr to make a diagnosis.

Permalink Reply by DragonandFox on September 20, 2015 at 10:22am

I found this on Dr Olsen's study:

http://www.jaad.org/article/S0190-9622%2812%2901054-7/abstract

I will try to call her this week, but if I understand correctly this study is outdated and a mere nineteen people were used?

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 DragonandFox on August 11, 2015 at 10:34pm

hi Lo.  If you want I can still email you the doc, but I wanted to try this google doc 1st.  can you access it?  :)

Permalink Reply by Lo on August 11, 2015 at 10:40pm
It looks as if j can on my iPhone. Thanks!
Permalink Reply by DragonandFox on August 11, 2015 at 10:35pm

yes, please share the doc with those other people.  If we get a bunch of people, I'm going to run with this and obviously I'm going to need all of your guys help!!  Maybe we can ALL take the form to all of our local Hospitals/Universities to find multiple people to pay attention to us!

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!

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