Giving bereaved people the chance to drop the mask
They also say having a medical professional on hand who can answer the difficult questions they have about Sudep is invaluable.
More than 50 people attended EB’s one-day regional conferences in London, Cambridge and Exeter. A further meeting in Edinburgh is due to take place on September 22.
Carla Wilton, who lost her daughter, Helen, 39, three years ago, sums up how many bereaved families feel.
“Telling people you have lost a child is a bit of a conversation killer,” she says. “It’s something no-one wants to talk about – instead they will go out of their way to avoid the subject.
“But meeting like-minded people at the conferences gives me the confidence to speak out – to say what I feel. If I burst into tears or witter on – everyone understands because they’ve been in the same situation.
“When someone tells you they lost their son earlier this year, you can completely relate to that feeling of being so raw and vulnerable. But then you also gain hope from speaking to other people who are further along in the grieving process.
“Personally, I find the group meeting brilliant,” says Carla, a 67-year-old widow, who lives near Taunton. “I’ve made friends there – and I won’t be without it. It’s energising. There’s a feeling of kinship. Yes, we all grieve in different ways - we can rage, cry, turn out the child’s room, or keep it the same way for 15 years – but we have all got one thing in common: the fact we have been through this unimaginable pain and it could’ve been prevented.”
Carla, who attended the Exeter conference, said she found having the opportunity to talk about Sudep to Rohit Shankar, a consultant in adult developmental neuropsychiatry, helped her understand what happened to Helen.
“I haven’t met anybody who’s ever heard of Sudep and that’s the maddening, horrible thing. It makes me angry that people are still dying of it - there are so many questions left unanswered.”
Tracy Cowdray, EB’s bereavement support worker and counsellor, says Carla’s experience is typical.
“Coming together and meeting others in a similar situation is hugely powerful,” she said.
“Many of the people we talk to don’t feel able to share their grief in public – it’s like having to wear a mask. But when they come to the meetings, they don’t feel the need to wear that mask any longer. I’m not saying it completely eradicates that feeling of isolation, but it does help. Meeting other people; sharing stories and knowing you are not the only one that feels that way is so important.
“And, because people don’t know much about Sudep, they find it helpful to be able to ask a professional whatever’s on their mind.”
Tracy adds: “After all, the first part of grieving is to understand what has happened because unless you can do that, how can you come to terms with it?”