(Note: this page is still open for Donations - all funds raised will be put towards research by Sarcoidosis UK and will be doubled by the British Lung Foundation)

I want to run a marathon 

I have done since I used to get up early every year on a Sunday morning in April in the 80’s and watch the wonderful, enthusiastic runners in the London Marathon. 

In February 2004, I was unexpectedly diagnosed with a little known autoimmune disease called Sarcoidosis, which has no known cause or cure and which affects 1 in every 10,000 people in the UK. The disease causes small patches of red and swollen tissue, called granulomas, to develop in the organs of the body. In my case it attacked my lungs. It has also caused another problem with my heart which means the right side of my heart has to work very hard to push blood through the lungs and get oxygen round my body, as the vessels are damaged from the Sarcoidosis. 

This put paid to my marathon dream. 

April 2021 is Sarcoidosis Awareness Month. 

I’ve decided dreams still can come true. 

So, I’m taking part in my own version of a marathon to help raise awareness of my disease and raise funds to help find a cure to save lives for those that come after me. 

I am aiming, under Doctor’s advice, to walk an additional 3000 metres in 30 days in honour of Sarcoidosis Awareness Month in April. 

To most of you an additional 3km, or just under 2 miles, in a month probably doesn’t seem very far, even verging on the ridiculous, until I tell you that most days I struggle to walk more than 100 metres a day. This challenge will aim to make me double the distance I walk daily. 

Add to this that I’m also permanently attached to a machine pumping oxygen into me. This is because I have less than one lung’s capacity left available and my lungs are only 20% efficient at taking in oxygen from the air I breathe. 

It will be quite a challenge! 

Having lived with the disease for all these years I know how hard this will be and with all my dysfunctional joints, muscles, ligaments etc, I am going to do my darndest to finish this and if I can do it, I will see if I can’t do a little bit more. 

Why now? Well my condition is deteriorating and there are no treatments left, known to work with my current diagnosis. I was told just over a year ago that 50% of people in my condition do not survive more than 2 years untreated. So, my clock is ticking…If I do not do this challenge now, I may never be well enough to do it.  

If I can leave the world in a better place, even in a small way, then I have achieved something good. 

Please donate whatever you can afford and no amount is too small or big. 

Any funds raised that Sarcoidosis UK put towards research are doubled by the British Lung Foundation, so our efforts will really make a huge difference to people with sarcoidosis.

SarcoidosisUK is a small charity that exists to provide support and information for people with sarcoidosis, and to fund research into a cure for the condition. It is currently among the world’s largest sarcoidosis research funders and is passionate about helping to find a cure. SarcoidosisUK is dedicated to funding at least one major piece of research per year and will continue to do this until a cure is found. They rely on support to keep going! They receive no government funding and their work would not be possible without generous donations of time and money. 

Thank you so much for your kindness and generosity. 

Lots of Love 
Jules
❤️❤️❤️