WHEN Eloise Appleby heard a woman give an honest description of life with a rare disease, she was inspired to help others.
The 51-year-old was diagnosed with breast cancer two years ago and benefitted from all the support and research into the illness.
It’s a terrible, life-limiting condition which results in a daily struggleEloise Appleby
But when she saw a video of Darcey Kelly– on Facebook on Rare Diseases Day – talking about living with Ehlers-Danlos Syndrome and the impact it had on her life, Eloise wanted to help people with rare conditions to get the same support she did for her cancer.
And seeing Darcey talk openly about her experience inspired Eloise to do a 100km walk for Ehlers-Danlos Syndrome which affects the connective tissue in the body.
She said: ‘I was on leave for six weeks from work to recover from the operation for my cancer. It was Lent so I had this idea of doing a random act of kindness.
‘I looked at the Ehlers-Danlos Support UK website and decided to spend my time off training for a 100km fundraising walk from London to Brighton.’
Eloise, from Park Gate, completed the walk with her two nephews Tai Bucks and Sam March. She added: ‘I took them as insurance, to carry me over the finish line. But I think they were surprised by my stamina.’
Through the walk Eloise raised just over £7,000 which was more than she expected.
But wanting to help others did not stop with her fundraising.
Eloise has recently become the co-ordinator for a support group for people with Ehlers-Danlos Syndrome which in severe cases causes joints dislocating, organs tearing, curvature of the spine and delayed healing of wounds.
She added: ‘It’s a terrible, life-limiting condition which results in a daily struggle – and sadly often early death.
‘Yet the people like Darcey who have it are often incredibly determined to live as normally as they can.
‘I can relate to that from my time having chemotherapy when I had breast cancer. I wanted to avoid at all costs being the “cancer girl”.’
Eloise will take over volunteer area co-ordinator for Ehlers-Danlos Support UK from Charlotte Lee, from Knowle.
She will be organising support meetings for anyone affected by the condition, speaking up for the Ehlers-Danlos community in the Solent area and raising cash.
The next meeting is at the community learning centre at Brookfield Community School, in Sarisbury Green, between 6.30pm and 8.30pm on August 23.
For more details email firstname.lastname@example.org