“Be Who You Are and Say What You Feel Because
Those Who Mind Don’t Matter
and Those Who Matter Don’t Mind.”
– Dr. Seuss
I am 36 years old and I have an Autoimmune disease called Alopecia Universalis. For those of you out there who are only just familiarising yourself with Alopecia Universalis it means my body does not grow any hair at all. I have no hair on my head, no eyebrows or eyelashes and no body hair. At the age of 19 years I developed Alopecia Areata (patchy hairloss) which then worsened and progressed to the chronic form Alopecia Universalis when I was 22. From then on I have been totally and utterly hairless.
I decided to start this blog for a number of reasons collectively. Firstly, I feel there is a distinct lack of collaborative advice on the subject of Alopecia for those in the early stages of having acquired the disease. I wish to share advice on topics such as make up and beauty for the alopecia sufferer, information about NHS advice for wigs and what you are entitled to on prescription and also other interesting facts surrounding this disease which I have stumbled across during my journey.
Secondly I want my blog to give an honest and real account of Autoimmune Alopecia and the treatments available out there. Ofcourse it is up to each individual as to which treatment route to pursue but it is wise to do your homework before hand as to avoid raising hopes and ultimate disappointment. I must at this stage remind everyone that if there was a 100% successful treatment for Autoimmune Alopecia then there would be NOT ONE single person out there living with this disease. ( I did say I was going to be honest). It is very hard and very frustrating to hear of hundreds of people who have thrown money after money into treatments through shear desperation to get their hair to grow back. I was not exempt….I did the same when I was initially diagnosed. We must remember as sufferers that hair loss all over the world has become a MASSIVE industry and as a result many have tried to capitalise. There are many products available on the market both over the counter remedies and drug prescriptions from GPs or dermatologists claiming to “grow hair back”. I want to inform people to make educated decisions when choosing a treatment regime. BEWARE!
Thirdly, I want to speak openly and honestly about the distinct lack of INDEPENDENT RESEARCH in the UK and the rest of the world for Autoimmune Alopecia. In all the years I have had this disease there has been very little progress with research. Any research done has been either in the interest of major drug companies or for other similar diseases such as Rheumatoid Arthritis. Because of the similarities of the two diseases those drugs used on RA patients are then tried on Alopecia Patients. The only substantial research was in 2010 by a Professor in Columbia called Dr Angela Christiano who found a genetic link between Alopecia, Rheumatoid Arthritis, Type 1 Diabetes and Celiac disease. This was a break through in my eyes since it opened up the opportunity to look into diet with the celiacs relationship and gluten intolerance.
ALL HOPE IS NOT LOST. There is much exciting research going on at the moment surrounding other autoimmune diseases which I have been keeping my eye on over the past 2 years and there is definitely one avenue which is safe and effective and which can only ultimately benefit your body in the long run and that is NUTRITON and FOOD….. Please do not underestimate the power of food and nutrition and the many rolls it plays in the body. This is an area I am going to look into in great depths and share what ever knowledge I have found with you.
My interest in food and it’s scientific nature within the body combined with my many emotions such as anger and frustration of suffering Alopecia Universalis for most of my 20s with absolutely no help form the medical profession prompted me to set up the first ever independent research charity in the UK….
Autoimmune Alopecia Research UK is in the midst of being registered as a Scottish Charity and should be set up an running by the end of the year. This will be a very promising step forward for the Alopecia Community and I hope all will get behind it and support it’s campaign for raising awareness of the disease, educating others and ultimately funding for our own research to potentially cure it.
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..
You can follow the charity on facebook :
and contact them via their website:
*I must remind everyone that I am not a qualified practitioner in this field. The information I give on my blog is based on knowledge I have aquired over the years from personally dealing with this Autoimmune Disease and also liasing with hundreds of sufferers to gather important anecdotal evidence.
You can click “Sign Me Up” At the bottom of the page to get post updates emailed to you!
Much Love , Jayne x