On Rare Diseases Day in February this year, a moving piece appeared on Facebook. Written by London-based student Darcey Kelly, it described her life with a rare medical condition known as Ehlers-Danlos syndrome. Little did Darcey realise that her words – poignant and graphic – would have a huge impact on one resident of Park Gate in Hampshire.

Ehlers-Danlos Syndrome (EDS) is a condition – often inherited – that affects the connective tissues in the body. In serious cases, regular symptoms can include joints dislocating, organs tearing, curvature of the spine, fragile eyes and delayed healing of wounds. Acute pain and exhaustion are side-effects.

Reading Darcey’s account the day after her own discharge from hospital for post-cancer reconstruction, Eloise Appleby was immediately inspired to help.

“I was on leave for six weeks from work to recover from my operation, and it was Lent so I had this idea of a ‘random act of kindness’,” says the mother from Hampshire.

“I looked at the Ehlers Danlos Support UK website and decided to spend my convalescence training for a 100km fundraising walk from London to Brighton.”

The training and the walk – which happened at the end of May – went well. Fifty-one-year-old Eloise was joined in the venture by her two athletic 20-something nephews:

“I took them as insurance, to carry me over the finish line,” jokes Eloise. “But on the day I think they were surprised by my stamina. I also had the benefit of best ever walking boots, thanks to the great staff at Millets in Fareham, who had talked me through all my kit requirements with huge knowledge and patience.”

The total raised by Eloise and her nephews was just over £7,000 – beyond their wildest expectations when they signed up for the walk back in February. The total includes over £200 raised by her daughter’s sale of home made cakes at the Sarisbury Show on the Green in June. A final contribution – a cool £500 – has recently been added to the team’s JustGiving page.

But the story doesn’t end there.

Eloise has come across several sufferers from EDS since committing to the walk. She became deeply conscious of the way she benefited from the extensive research and support underpinning her own treatment for breast cancer two years earlier, and wanted to do something more for those with a rare condition that was so much less visible and less well understood by the medical profession.

“It’s a terrible, life limiting condition which results in a daily struggle – and sadly often early death,” she said.

“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 chemo when I wanted to avoid at all costs being the ‘cancer girl’.”

So Eloise has signed up to become the volunteer area co-ordinator for Ehlers-Danlos Support UK, taking over from Charlotte Lee of Knowle as she heads off to university in Cardiff. Eloise will be organising local support meetings for anyone affected by the condition and networking opportunities, speaking up for the EDS community in the Solent area and continuing to raise money.

Anyone affected by EDS living in the area in and around Southampton can attend the meetings. The next one takes place at the Community Learning Centre at Brookfield Community School in Sarisbury Green (near Fareham) from 6.30pm to 8.30pm on Wednesday, August 23. A shuttle service is provided from nearby Swanwick Station at 6pm. Membership of EDS UK is free as of this month, and Eloise is keen to hear from anyone not already linked to the Solent area support group. She can be reached at southamptonedsuk@gmail.com or on 07713 876 168.