This was posted 2011 by Jayne Waddell. If you read to the bottom you will see the progress which has been made over the past 6 years.
I have suffered Alopecia Universalis for 10 years of my life…….. Why is there no Independent Research into Alopecia in the UK?
I initially set up this blog to raise awareness of this disease and help others try to come to terms with coping with Alopecia but quite quickly I realised that awareness for me is just NOT ENOUGH……I do not know of any other disease which funds for support and awareness and stops there… All other charities do both. The funding for research in its self raises awareness of the disease and surely this is a great support for the community, knowing that we are being pro active in the search to cure this horrific disease?
With NO research our community has NO hope. This has been going on for far too long.
The concept baffles me and brings to the surface many emotions such as anger and frustration and helplessness. It is time for a change. Not only to benefit myself but for all the hundreds and thousands of people out there in the UK who have been affected by this awful disease.
There are 60,000,000 people living in the UK.
Statistics suggest 1.7% of the British public suffer from Alopecia at some stage of their lives.
That is 102 000 people in the UK alone and it is becoming increasing prevalent.
I would like this Tweeted round our community…… as many people as possible, and if you could each just leave a short message saying YES you would like Independant Research into Alopecia….. and why ….. and leave contact details that would be BRILLIANT.
Lets get this ball rolling….. I don’t mind doing the hard work if I know I have a driving force behind me! Lets get behind this and PUSH FOR WHAT WE DESERVE!
Alice Frost is another girl who feels the same and is dedicated in the search to find a cure…. Please read Alice’s story below.
Since writing this blog in 2011 – much has changed. The Charity Autoimmune Alopecia Research UK was fully set up by myself and it’s profile continued to rise until enough money was raised to recruit wonderful scientists based in Glasgow Univeristy who developed the first Biobank for Alopecia research in Europe. We also collaborated with AstraZeneca and Glasgow University to fund a Phd student to research the topic of alopecia in depth. This was a very proud moment for myself as I had worked tirelessly for alopecia to be taken seriously for the autoimmune disease that was – finally I was heard and we were making great progress. Shortly after this time I emigrated to Australia to be with my fiance and his two sons and I reluctantly left AAR-UK in the hope that it will continue to follow the path I set it on and achieve successful things in the future..
Please visit http://www.AAR-UK.org for more information.
I WANT TO KNOW WHY MY BODY IS DOING THIS… I WANT TO HAVE RESEARCHERS LOOKING TO CURE OUR DISEASE.
I am 16 years old and have had Alopecia Universalis for 19 months. I was once a very attractive, bubbly teenager who was always up for a laugh and would never miss out on anything. A year on I can barely leave my bedroom out of sheer embarrassment of having no hair. When Alopecia Areata first set in I had booked a trip away to Berlin with a group of friends and I was so excited! My hair was my crowning glory, as it is for any youg girl… At the time I rememeber having 3 inch long, black roots at the top of my head and thought there was no way I could go to Berlin looking like that ! So the day before our trip I went to the hairdressers to freshen up my hair to then be devastatingly told that there were three tiny patches on the back of my head about the size of five pence pieces. I felt physically sick and from that day on I turned into a nervous wreck. Every day of that trip away I cried, I was frightened and did not know what or why my body was doing this. I was so frightened each time the wind blew I would run inside incase someone noticed the bald patches. To top it off, some boy decided to bully me ad really highlight my problem by telling me that as soon as we got back to England he was going to tell everyone that my hair was falling out. I can definitely say that I have come a long way since then, I plucked up the courage to go into school without my wig and it did feel great, but at the end of the day I still was as far away as feeling feminine as I possibly could be. At this stage all of my eyebrows and eyelashes had fallen out and that is what really hit home and made me realise how serious this was and how different looking I was becoming to everyone else. I have always been very open about my condition but it will forever haunt me and has taken away what should of been some of the best years of my teenage life. It sickens me to think that this cruel illness effects one in every one hundred people and they most likely feel as awful as I do or even worse. If so many people have this, why has no one done anything about it? There are other charities out there that provide support for others who have Alopecia but none of them further this support by producing hope for the ultimate….. which would be a cure. The only way this problem can be fixed is if we have a charity funding for this well needed research. I want research to be done and I want to be pro active and live my life with HOPE that one day our medical community may know what Alopecia actually is and make steps towards helping us find a cure. A new charity would give a new and exciting way to expose alopecia but have the added benefit of actually providing research to the alopecia community. Surely this has to be a win win situation. We could have exciting ways to raise money and really all club together. I know that if there are so many people suffering from Alopecia like me and feel as strongly as I do about finding a cure then I know WE CAN MAKE THIS WORK.