Replies to This Discussion

Permalink Reply by Debs on March 1, 2016 at 3:35am

Ladies in the UK, please contact the team at Guys hospital to donate blood samples for FFA research.

Permalink Reply by Meme on March 2, 2016 at 3:29am

Emailed him but have not heard back so far. Having said that I have seen him before so he may well have my blood sample, cant remember. Thanks fro the info Debs.

 

Permalink Reply by Isabel on March 5, 2016 at 10:47am

I also emailed him to ask whether it would be possible for me to contribute with a blood sample even though I'm in Portugal. I even offered to go to the UK around Easter. I haven't gotten a reply so far...

Permalink Reply by sallylwess on March 30, 2016 at 1:49pm

I have emailed them, but I have never heard back.

Permalink Reply by Marytee on March 7, 2016 at 3:37am

Thanks for this

What is the blood tested for?

Permalink Reply by Debs on March 14, 2016 at 5:19am

I heard back from Dr Christos, it took a couple of weeks, I am going to Guy's hospital on 30 March to give my blood sample and help woth their FFA research. Please ladies email Dr Christos, he will get back to you and take part in their research. All details are in my post.

Permalink Reply by Meme on March 14, 2016 at 5:25am

He has contacted me and the blood sample I gave when I saw him two years ago is still ok for him to use. Thanks for doing this Debs, do let us know if we can help in any other way.

meme

Permalink Reply by Isabel on March 14, 2016 at 6:14pm

In the meantime, Dr. Christos has contacted me as well!

Permalink Reply by Gai on March 18, 2016 at 4:28am

Hi Debs, I was pleased to hear there was some research happening. I am in Australia, so won't be able to do blood samples, but thought the research team might like to look at the mthfr gene mutation. I was diagnosed with this about 12 mths ago and now FFA. The gene stops you eliminating toxins from your body amongst other things. Maybe toxic buildup in our bodies sets this condition off. Mthfr.com is a great website and resource. Approximately 50% of world population has one defective mthfr Gene and 15% has a double gene defect ( ie one bad gene from each parent)this affects your ability to methylate, elimate toxins and absorb folate. My dermatologist said I was in good company as Queen Victoria was believed to have this condition. Well she wore a lot of white lead based makeup, so maybe couldn't eliminate that - makes you think. Perhaps the research team would be interested in this line of research too.

Permalink Reply by Debs on March 30, 2016 at 12:01pm

Ladies, I went to Guy's hospital today (30 March 2016), I gave a blood sample and had a very interesting conversation with Dr Tziotzios.

He needs samples from 1000 women with FFA to have enough samples for his research to give meaningful results.

If you live in the UK please contact Dr Tziotzios on the above email, he can arrange for you to give a blood sample at a clinic near to you if London is not close to where you live.

This research is only able to find a cause if the researchers have our DNA. Please contact him if tou have not done so already.

Thank you.

Permalink Reply by Isabel on March 30, 2016 at 4:34pm

I went there as well, today, early in the morning!!

Ladies, even if you're not in the UK, if you are able to get to London after contacting dr. Tziotzios, it would be great! He is extremely accommodating in booking an appointment for us and seemed a very receptive person.

Permalink Reply by Gilly on May 7, 2016 at 4:36pm

Hi all

I went to Guys last year and gave a blood test.  It was so easy and I got more information from Dr Tziotzios than anyone else I have spoken to, my derm unit here has just said that there is nothing they can do for me and it will stop eventually. 

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