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My name is Gaylia Ashby but all my friends call me Gayle. I am married with 2 young children and live near London. My hobbies are music, DJing and singing. I was diagnosed with MS in November 2003 when I was 36. Then in May 2004, I was diagnosed with Devic's / NMO instead. I was devastated and felt very alone, so I got myself on a computer course to learn about this rare illness. I managed to find a great course specifically designed for disabled people from a charity called U Can do IT, . At first I was not really interested in the internet but my interest grew after my diagnosis. Now I love it and use it all the time - having such a rare illness it's best to be able to find out all the information that there is all over the world. I am 1 of only 50 in the UK that have been diagnosed with Devic's. At present I am taking a drug called Azathioprine which I have discovered is taken by most Devic's people. At present, thanks to this drug, I am leading an almost normal life. After doing a lot of research on the internet I found that there was little useful information about this illness, and no support anywhere. I felt that we needed somewhere to meet and discuss our feelings and help one another. Last year I attended the first ever Devic's conference in the UK. There were about 30 people there including carers and two of the best doctors I have ever met, Dr Anu Jacob and Dr Mike Boggild. These doctors work with the Walton Centre in Liverpool which is a centre for rare neurological conditions. Dr Jacob is trying to get details of as many people worldwide with this illness. Once the magnitude of the problem worldwide is understood funds for research can be obtained .That's my other reason for building this website - we need to know more about this illness not just for us, but for people who are diagnosed in the future. Please.. if you have Devic's, or you are the parent, guardian or carer of someone who does, fill in the survey. This will put your name on our database and and doctors can contact you or your doctor for help in research- this is our hope I myself will not give up this fight. I want there to be somewhere safe for us all to go and I also want the best information and newest research possible available here on this site. There are a lot of websites out there that say things about this illness that I do not find positive. I need this site to be a positive energy in all our lives, so let's do it together and make this our home. Hopefully we will all benefit from this site and give each other the hope and love that we all need. I put on a DJ event, Thee Big Hug, in April 2005 to raise funds to build this website. We have raised £650 so far but we need to raise more money to keep this site up and running . Gayle xxx |