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Comment by Gai on May 9, 2016 at 11:20pm

I would love to attend the CARF conference but too expensive as I live in Australia. I was wondering if someone who goes to the conference could ask a question for me. I found out last year that I carry a double copy of the mthfr gene mutation. This stops me from being able to detoxify environmental and all other toxins I am exposed to. Is this an area of research and could it possibly be a cause of FFA.

Comment by MnM on May 9, 2016 at 10:28pm

Sad in Chicago, below is the CARF link. There is a conference coming up in June. The Chicago support group is held a few times a year. I've been to one meeting so far and plan on attending the July support group meeting.

http://www.carfintl.org/

Comment by Wyobalance on May 9, 2016 at 10:27pm

The conference is June 3-5.  Register at www.carfintl.org.  They are held every 2 years.  I went to the Chicago one 2 years ago (darn you missed it) and it was impressive.  120 patient attendees, and about 12 docs were there

Comment by MnM on May 9, 2016 at 10:25pm

Wyobalance Unfortunately I am one of the younger women with FFA, diagnosed at 29. My case is more severe than my moms, I was actually diagnosed before she was. She didn't recognize the symptoms and seek a doctor until after I was diagnosed. Luckily her FFA is stable whereas mine is more symptomatic and I continue to loose hair. I may contact Guys Hospital to see if they have any interest, even if it's just to provide information.

Comment by Sad in chicago on May 9, 2016 at 10:13pm

When is the next Carf conference....do they have a website?  I just found out about them and am here in Chicago and would like to explore.  Thx

Comment by Wyobalance on May 9, 2016 at 9:13pm

MnM I would think a mom/daughter with FFA would be of interest to the geneticists. I'm in touch with quite few folks with FFA through Carf, and only met one woman at the Chicago Carf conference two years ago that said her daughter was beginning to lose her eyebrows.  Others have no relatives with it.   Interesting....

Comment by MJ on May 9, 2016 at 9:03pm

Is anyone with the intralace system willing to share photos? Would love to see how they look. I am hoping more places start offering these types of systems within the next couple of years as it isn't practible for me to travel out of state to get one and handle maintenance. MJ

Comment by MnM on May 9, 2016 at 8:50pm

Thanks for checking Wyobalance. I was really hoping I would be able to send a sample from the states. Both my mom and I have FFA, and while I think environmental factors have a big impact, I was hoping hoping genetic contributors could be explored.

Comment by Wyobalance on May 9, 2016 at 7:45pm

I emailed Dr. Tziotzios and it seems we need to travel to London and are not able to send specimens from the States.  That's too bad, as it would really help to attain the number of subjects that he needs.

Comment by Liz on May 9, 2016 at 4:10pm

Hi Ladies. I know there is another thread about blood tests but I had difficulty adding to it so I thought I would post here. Today I had an appointment with Dr Christos Tziotzios at Guys Hospital. He needs more blood samples. By providing blood samples we are helping the research to continue. This may lead eventually to more specific treatment and perhaps even prevention of FFA. This might not be in time to help us but may help our children and grandchildren. Please help if you can :)

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