Hello, I'm Sara and I'm from Leeds.
Many years ago I had a moderator role for a support group and now that I've been a member of SWAN UK for three years I've decided to volunteer as a SWAN UK Parent Rep!
In my area I think the key issue that affect undiagnosed families is the unknown. There is a lack of support from professionals locally and a feeling of them washing their hands of you when their usual tests come up negative. There is a feeling of being alone.
I have had such great support from SWAN UK and believe I can be a support to other parents in the same situation.