My Sister, Amie, has suffered from Behcet's for 20 years. It is a rare disease, with 'only' an estimated 2,500 people suffering from it within the UK and with very little understanding of how to effectively manage its ravaging effects and with no known cure. Whilst not proliferate, those who do suffer, can and do have awful symptoms, as has Amie, which can be so appallingly intrusive in the quality and dignity of the lives of those suffering that they are often left feeling totally overwhelmed and currently limited in pain/symptom management and without hope of any long-term reprieve.

With the low number of sufferers in the UK, the NHS is severely limited in both its research (if any) and its knowledge of how to optimally manage and treat the impact of the various symptoms such as extreme joint pain and/or loss of sight to name but a few. In short, Behcet's is a chronically debilitating disease with a low prevalence and a high level of complexity.

Before I share further please find my sister's own testimony following as to how Behcet's manifested in her life 20 years ago.

"In 2003 I really wasn't feeling very well, awful actually, but one terrible morning I woke up with the worst headache of my life, and when I opened my eyes, everything was a blur, like trying to see out of glasses covered in Vaseline - I was terrified. Overnight I went from a normal life to one where I couldn't drive, couldn't do the school run, where I had 4 children in 3 different schools 10 miles away. I couldn't read, see the settings of the oven, washing machine, and suddenly, in an instant I lost my job. Eventually I was referred to an Eye Hospital, but by then I had lost 70% of sight one eye in 38%, and it couldn't be reversed, I was devastated, the life that I had was over and would never get it back.

During this time though, it wasn't just my eyes that were effected, because it is a inflammatory disease, it attacks blood vessels, and therefore it can attack anywhere. In my case it attacks my joints and the often extreme pain at the moment is stopping me be able to enjoy my life which can only be marginally and resentfully (but gratefully) managed by a shed load of pain killers, and I don't want to have to rely on these or morphine at night to allow me a few hours of sleep. The function and pleasure of eating has also been severely impacted as I can only eat only soft foods now because my food tube is inflamed and I will choke otherwise. This, at the moment, is my life, and I wouldn't wish it on anyone. Behcet's is a rare illness - even my local doctor has confessed that I'm the only patient he has seen with it, but as a rare illnesses, gets very little funding, and that means very little research."

Behçet’s UK was started by a nurse 40 years ago who, herself, was a sufferer. Behcet's UK cares for all those affected by Behçet’s, including patients and their carers. They promote research into this rare, complex, and lifelong condition with the ultimate aim is to find a cure but in the meantime, they strive to obtain the best care for all Behçet’s patients.

On my ride, which will be a 1,000 mile route, I am seeking your financial sponsorship for Behcet's UK, the only recognised charity devoted to Behcets in the UK. I appreciate there are many large worthy causes to give your hard earned money to but can I ask you to please consider Behcet's UK as an alternative or additional and worthy organisation. Both Amie and I would like to enable a contribution with your help to both the current and next generations of sufferers and we hope that her story, my ride and your donations will act as a baton in the relay to find a cure and help presently manage the lives of those who are suffering.

Finally, you may be wondering why we chose the title of "The Broken spoke". We chose it as we felt it represents the lack of something not working properly, incomplete that almost looks ok but may have a dire side effect at any moment. I'd like to add here that beneath this title and Amie's daily battles I would like you to understand that for all Amie's pain and impacts to the quality of her life she has continued to endure and give endless love and care to those around her. In fact we were originally going to call the ride "Amie's Love and Endurance" so please see please read "The Broken Spoke" and this synonymously.

Thank you for reading and your consideration.

With love and appreciation,

Mike & Amie