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 

Kylie and daughter Lucia’s Story

I’m Kylie and we have three daughters, my youngest Lucia is aged 7 months. Here is a bit about Lucia’s condition. Lucia was about 4 months old when she was diagnosed with Urticaria Pigmentosa, she had the spots on her body for about 2 months beforehand but the GP had no idea what they were 

Sandra’s Story

I am 43 and first noticed spots on my arms about twelve years ago. These increased very gradually at first and were not recognised by a variety of GPs. I eventually asked for a referral to a dermatologist at my local hospital and was lucky enough to see someone who was able to diagnose UP