Rachael Humphreys says she has 'just been left' to deal with a 'debilitating' rare disease.
She takes medication to control her anxiety, but said she has never been offered counselling."When you get diagnosed with a rare disease, or any kind of chronic health, you go through this grieving process," she said.
"When you have a flare up that's, for me, when I go into really intense grief. Because you're in horrendous pain, but also because you're realising your body doesn't work properly." "In Wales, we don't have that specialist approach to Behçet's, we don't have that coordinated approach. It's about me having to try and signpost myself where they need to go", she said.Prof Iolo Doull, chairman of the Rare Diseases Implementation Group in Wales, said about 170,000 people in Wales were affected by rare diseases.
"So if there are a number of patients in Wales, obviously we would aim [that care is] delivered as close to home with as much quality as possible. But sometimes we have to recognise that people will travel across the UK to single centres.
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