Emma Burns

40 in 40 in aid of Behçet's UK

Fundraising for Behcet's UK
raised of £500 target
by 30 supporters
Donations cannot currently be made to this page
Event: 40 in 40, on 30 June 2023
Participants: Simon Burns
40 in 40
Campaign by Behcet's UK (RCN 326679)
Run, walk or push 40 miles or 40 kilometers in 40 days. You choose and set your own pace. If you want to run 10-miles every Saturday morning for four weeks thats great and so is walking 1 to 2 kilometers every day or two for the full 40 days.


For the last 40 years, Behçets UK has represented and supported all Behçets patients in the UK, including those yet to be diagnosed, and continues to do so. They promote and fund research into the condition and their ultimate aim is to find a cure but in the meantime, we strive to secure the best care for all Behçets patients and assist all affected by the condition. Behçets (pronounced Bet-Jets), also known as Behçets Disease or Behçets Syndrome is a rare, complex and lifelong condition resulting from disturbances in the body's immune system. Symptoms, which can be debilitating, occur wherever there is a patch of inflammation; this can be anywhere where there is a blood supply from the brain down to the feet. Behçet's UK doesn't receive any government funding so rely on generous donations through fundraising campaigns like this one to continue to provide their services and deliver their aims, as well as raise awareness.

When I was 18 I started experiencing mouth ulcers on a monthly basis that would leave me unable to speak, eat, or even drink water. I started to feel like I had the flu most days. Just as one bout of ulcers started to clear up, I'd be attacked by another. It was almost as if the healed ulcers were just making room for new ones. As years went on I had to learn to live with these debilitating symptoms, going through my 20s not knowing why my own body was attacking itself. Behçets is an invisible illness, so unless I'm in a bad flare you wouldn't know that anything is wrong with me. I've been shamed into thinking I was overreacting, I've been tested for countless terrifying diseases and was once told "Well, it's been 10 years and you're not dead, so it can't be anything too serious!" Finally, after 12 years, when my symptoms started to affect my everyday functioning, due to added fatigue, mental health issues and joint pain (on top of ulcers and sores) I was listened to by a GP and diagnosed with Behçets Disease in the Rheumatology department of my local hospital.  

Diagnosis after 12 years brought a lot of relief, of course, but no one should have to wait that long for answers when it comes to their health. Living in a body that hurts itself is highly traumatising and the lack of government support and funding that is available to help people with this disease is frightening. Without the support of my amazing husband Simon, who will be taking on this fundraising challenge with me, and the care and understanding of everyone at Behçets UK, I genuinely don't know what I would have done. 

All I can do is take action so that I can maybe contribute to the prevention of other people not having to go through the trauma I once faced. It's never nice to be diagnosed with an incurable, lifelong disease, but if I'd found the answers a lot earlier in my life, it would have at least given me time to develop healthy coping mechanisms and learn why my body failed to sometimes function.

Behçets has taken a lot away from me and I've had to grieve the life I once lived. I'm still working on learning my limits. But one thing I refuse to have taken away is my love of the outdoors and walking. Being outside and hiking saves me from myself; it reminds me to slow down, and it makes me feel empowered and in control of my body when I reach the summit of a difficult climb.

This year, I'm taking part in 40 in 40 this year in aid of Behçet's UK. The aim of this fundraiser is to run, walk or hand-push 40 miles or 40km in 40 days. 40 in 40 will run between 1 May and 30 June 2023, but because I want to raise as much money and awareness as possible I want to make it a bit more challenging for myself. So, I've decided to walk The Limestone Way in the UK, which is 46 miles, in 3-4 days from the 28th of May, with Simon by my side to support me. 

Behçet's is a difficult disease to live with and Behçet's UK provides invaluable support and resources to patients, all over the UK. 

Thank you for visiting my page and reading about Behçet's and my story. I would be so hugely grateful for any donation that you are able to make.


About the campaign

40 in 40
Campaign by Behcet's UK
Run, walk or push 40 miles or 40 kilometers in 40 days. You choose and set your own pace. If you want to run 10-miles every Saturday morning for four weeks thats great and so is walking 1 to 2 kilometers every day or two for the full 40 days.

About the charity

Behcet's UK

Verified by JustGiving

RCN 326679
Behçet's (pronounced Bet-jets) is a rare, complex and life-long condition caused by disturbances in the body's immune system. Behçet's can affect people of any age, but it most common in those aged 20-40. The society runs a helpline, funds research, and offers financial support for patients in need.

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+ £83.75 Gift Aid
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