Lesley’s Story

I was diagnosed with UP in 1987 and I am now 59. The only symptoms then were an ugly rash on my body and legs which got worse in the sun and heat. In October I had a sudden collapse, unconscious for over 3 hours, flushing, diarrhoea and vomiting. The hospital consultant and GP think 

Naomi’s Story

I currently take ranitidine, loratadine, sodium cromoglicate, montelukast. I took interferon A for the past seven months but it had no effect. My main symptoms are headache, stomach problems, severe bone pain and extreme exhaustion. I had a third bone marrow biopsy to confirm the gene affected. I have had two bad reactions to the 

Cycling 1,000 Miles for Abi

Mike Fekete, whose wife has mast cell activation syndrome (as well as Ehlers-Danlos), cycled 1,000 miles to raise money for our charity. Through the generosity of his friends and family, Michael raised an impressive £1507.50 pounds. We asked Mike a few questions about how he went about organising and completing this great event… So how