Ehlers-Danlos Patients Bond on Facebook – Then End Up as Hospital Roommates
November 22, 2013
They met and bonded over Facebook- two desperately sick women with extremely rare illnesses glad to find someone with whom they could share their experiences.
Except Ruth Appleby and Catherine Davies were then stunned to find they were in hospital beds next to each other.
Ruth and Catherine both suffer from life-changing Ehlers-Danlos Syndrome, which means they both have to be fed through tubes into their hearts.
Ruth went undiagnosed for years with some doctors thinking some of her symptoms– like easily dislocating joints– were self-inflicted.
But she realised her Facebook friend was about to become a real one when she spotted her name on a ward admissions list at Cardiff’s University Hospital Wales.
Ruth told WalesOnline: “It was strange when we first met because we had only talked online. It struck me how tall and thin Catherine was. But from a couple of hours after we met, we really clicked. We will probably be best friends for life because we get on so well.”
When Catherine left hospital this week, the two were “almost in tears.”
“All the horrible things we have been through together, we will probably be friends for a long time,” the 31-year-old said.
When the two started chatting on the Gastroparesis and Intestinal Failure Trust’s Facebook page, Ruth had just been diagnosed. After years of telling medics her suspicions, they finally confirmed it in August.
“Doctors look down on YouTube and the net,” Ruth said.
“If you bring them print-outs from the web, they are not very open to that. But going on there helped me find out what was wrong, so I could get diagnosed.”
Ruth, from Cardiff, and Catherine, from Barry, also in South Wales, began messaging one another.
“When I found out there was someone local, I started talking to her,” Ruth said.
“She was willing to share her medical information with someone she had never met before– I thought she was massively trusting.”
Catherine– diagnosed two years ago– knew who the best EDS experts were.
“She was able to advise me which doctors to see locally and in London who were familiar with the condition,” Ruth said.
EDS affects collagen in the body leaving sufferers feeling weak. It can cause joints to constantly dislocate and affects the gastric system– Ruth has to take in 16,000 calories a day because she constantly vomits.
It can leave skin stretchy and has left Ruth with marks on her eyes.
Catherine was “quite shocked” when she realised Ruth lived so near.
“I thought I would inbox her,” the mum-of-one said.
“She had been only just diagnosed and was confused, whereas I had been through all that.”
Speaking to someone else with EDS “helped quite a bit.”
“At the hospital, it was like we had known each other for years. We were walking around together on our last night with Supergirl onesies on. We must have looked like drunks!”
Neither of them will get better, and unless a cure is found, both Catherine and Ruth will always have tubes running into their hearts.
The pipes have to be perfectly clean as the slightest contamination could kill them.
Next week Catherine is going to London for “nerve scanning.”
“It’s quite scary,” she said. “I’ve got a little girl, a five-year-old daughter and I need to be alive.”
There is a 50-50 chance the youngster, named Aaliyah, could also have EDS.
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