Comment

Comment by Alice on March 24, 2013 at 10:57am

Thank you for posting the link to the FFA study in NC. I asked my derm for a referral there on Friday, before I knew about the study, and just filled out the participation form online. Will keep you all posted on results.

Comment by Simone NJ USA on March 24, 2013 at 8:17am

Thanks for the info, AC!! Hope you make the right decisions regarding treatment. It's a hard decision considering there are no proven results...I, myself have just decided to try treatment after many, many months of resisting. It was not an easy one and it is comforting there are more doctors willing to do research for FFA...we all pray for a solution one day soon...

Comment by Debs on March 24, 2013 at 3:34am

It is at least heartening to know that there are several research studies happening on FFA. With this group having members in several countries we are well placed to learn of any new developments too.

Comment by AC from CA, USA on March 24, 2013 at 2:33am

Link to study info: http://www.permanente.net/homepage/kaiser/pages/c12551-48357.html

Comment by AC from CA, USA on March 24, 2013 at 2:10am

Hello Ladies,

Still trying to come to terms with life lived with FFA. In particular, trying to decide if I want to embark on the treatment path...just can't readily stomach the idea that taking high powered systemic drugs is a good thing. I am planning to see an alopecia specialist soon and hope that will clarify things for me.

Speaking of this specialist I will be seeing, those in the US, west coast, may be interested in participating in the following study by this US physician with national prominence as an expert in studying/treating alopecia. She's published various medical studies and a book on managing this disease. You can look her credentials up on the internet.

Cicatricial Alopecia Research Study

Dr. Paradi Mirmirani is now enrolling patients with cicatricial (scarring) alopecia in a research protocol that is being conducted in collaboration with the Department of Dermatology at Case Western Reserve University. Patients over the age of 18 with active cicatricial alopecia(any variant, treated or untreated) are eligible for enrollment. Participation includes filling out a hair loss questionnaire, scalp photographs, and two scalp biopsies. Scalp biopsies will be evaluated for changes in enzymes of the sebaceous glands (peroxisomes) which may lead to lipid accumulation and then destruction of the hair follicle. There is no compensation for participation in the study.

For patients requesting further information or patients interested in participating in the study please contact Paradi Mirmirani at: Phone: (707) 651-2552 e-mail: Paradi.Mirmirani@kp.org

Comment by Simone NJ USA on March 23, 2013 at 3:01pm

Hi Sandy:

Thank you for the info.. I just signed up to participate...

Comment by PamW San Diego, CA, USA on March 23, 2013 at 2:32pm

Sandy, thanks! Just signed up to participate.

Comment by Debs on March 23, 2013 at 2:26pm

Sandy, I just checked this link out - fantastic some research is being done - I completed a survey here in the UK just a few weeks ago for Dr Harries in Salford.

I have emailled this survey in the States and told them about our group, I also said we have ladies in UK, Germany, Iceland and Portugal so is it possible for any of us to join in this study, with any luck we can get an opportunity for more of us to contribute data.

Thanks Sandy.

Comment by Caro UK on March 23, 2013 at 11:47am

Debs thanks for the feedback on Planquenil. I saw my GP yesterday and asked him to change my prescription to Planquenil. He said it shouldn't make any difference, but agreed to my request. Started taking it straightaway, and so far I've had none of the burning stomach pain that I had previously. I'm taking 200mgs twice a day.
Went shopping yesterday and because it was so cold I was wearing my fur hat. (not real fur) Felt quite normal! The bad weather does have some benefits!

Comment by Debs on March 22, 2013 at 10:26am

Judy thanks for the info on your probiotics, I will see what I can find in my local health food stores. XXX

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