Is the Genomes Project the one that they were doing at Guy’s? I didn’t see the BBC News about it. Do they hope to have the results by the end of 2018?
If it is the research project at Guy’s, I was hoping for the feed back at…"
Like you, I thought that my hair loss was caused by stress, and that it would return once I left my stressful job and found something less stressy! I had spoken to my Dr in the Autumn of 2014 after noticing more and more hair loss…"
Thank you for sharing your story. It is good to hear about different options, and how people get on with them. I have been thinking about ‘the Lucinda Ellery’ option, but don’t like the idea of the cost and…"
I hadn’t heard about Graham Little Piccardi Lasseur Syndrome with FFA - so I looked it up. Interesting that they are prescribing Thalidomide for it (New Zealand Website)- I thought that that drug had been abandoned following the Law…"
Thank you got your post. I re-call many of the post extracts that you mentioned. This site is definitely a valuable lifeline for us all. I have only been diagnosed with FFA just over a year ago - but have probably had the condition for 4+ -…"
It is a cruel situation for us to find ourselves in. Also with little success rate with most treatments available. On a positive, the Doctors at Guy’s will soon be releasing the results of their research. I am hoping that…"
For the reasons that Beez gives, I decided not to accept any treatment that would disfigure my head further; damage my eyesight etc etc. I use a scalp shampoo and ointment a couple of times a week to help with the itching and hair loss - but…"
I think that unless we are really fortunate, none of the treatments give very positive results :(. I was diagnosed a year ago, although, I believe that I had had the hair loss for a few years before that, but my hair loss seems…"
"Hi all, just found and joined this group. I thought I was the only one having to put up with nhs. Had very similar experiences. When sent for 2nd opinion, waited 3 months and ended up with original dr. Then had to wait another 3 months to finally…"
I too had Acupuncture and Chinese Herbs when I was first diagnosed. But I don’t go anymore as I can’t justify the cost at the moment.
Dr David Fenton at Guy’s is the specialist who I found to be the most informative…"
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