Replies to This Discussion

Permalink Reply by Embo on September 7, 2016 at 12:01am

My sister (58) and I (56) both have FFA and live in the United States. We thought our blood samples might be especially interesting to the DNA study. If we have to live with this condition we thought we should at least get a nice trip to London out of it. I reached out to Dr. Tziotzios two weeks ago and he quickly replied he'd love to have us participate. We just have to get to London on a Wednesday before October 31st. I encourage as many others to participate before the upcoming deadline.

Permalink Reply by Minter on September 7, 2016 at 8:51am

I like the way you think Embo, enjoy London, it is a great city!  I am in the USA, but I am planning a visit to London at the end of October/beginning of November, so I think I might be too late for the study.  I will email the doctor and see what he says.  

Permalink Reply by Isabel on September 7, 2016 at 5:14pm

Hi Embo!

That is great thinking! I thought the same last Easter and got myself to London and it is as you say - I got a nice trip to London out of it, although a shorter trip since I came from Portugal.

If you don't know London, you and your sister will love it - it's a great city to visit!!

Thanks for your participation! Maybe this way we will get the answers we seek! I'm very optimistic in regards to this study!

Permalink Reply by Minter on September 17, 2016 at 9:05am

I just got a reply from him and will be giving my sample when I arrive over there in the beginning of November, he seems like a very pleasant man, so looking forward to meeting him and learning what else there is to learn about this FFA, hopefully his research will help others down the line :-)

Permalink Reply by Minter on November 4, 2016 at 4:43am

Visited Guys Hospital yesterday and gave my blood sample- it was very nice to meet Dr. Tziotzios, he is doing great research on FFA and he is still in need of volunteers to donate blood samples so if anyone is going to be in London I encourage you to contact him :-)  

Permalink Reply by Embo on November 10, 2016 at 6:34pm

My sister and I met with Dr. Christos Tziotzios at Guy's Hospital in London yesterday. We are patients 905 and 906 in the study and only the 29th group that are related. With 1 in 10,000 dealt this disease only 7% of those people are related. So "lucky" us. Hopefully our blood donations will help them determine which components of our DNA make us more susceptible to this disease. Dr T thought my dermatologist's regimen of Plaquenil and Clobetosol foam was a good, aggressive course for slowing down and potentially halting the hair loss progression. Just wish their was more I could do. Very thankful that brilliant people like Dr T are working to learn more about FFA to help us and the growing number of people that will be afflicted with this disease in the future.

Still think there's time to participate in the research study if you can get to one of the labs in the UK soon. Please reach out to Dr T if you can.

And we're having a great time in London. Got out of the US on election night. Wishing we could stay in London for the next four years.

Permalink Reply by Minter on November 12, 2016 at 10:22am

Yes there is still time, if I remember correctly, he said he would still be collecting samples until the end of the year.    Ha, I thought and said the same thing when I heard the stats, lucky me/us :-( 

Permalink Reply by Sas Holland on November 13, 2016 at 2:17pm

I will email them!

Permalink Reply by Isabel on June 23, 2017 at 5:50pm

Hi lovely ladies!

Does any of you that live in the UK know what's the current state of Dr. Christos' study?

Both me and my mother were participants and I'm so anxious to know some more about this condition...

Permalink Reply by Minter on June 25, 2017 at 8:16am

I haven't heard anything, but I am sure Dr. Christo's would update you if you emailed him :-)

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