Bath

South West

Rachel and Howl

Hi, my name is Rachel and I am the area coordinator for Bath and North East Somerset.

I was diagnosed with hypermobile EDS with classical features at he age of 40 and shortly after that with POTS, MCAS and airways collapse secondary to EDS. It was a relief after many years, to finally have a name and diagnosis for the issues I was experiencing. On the back of my diagnosis, both my children and other family members were also diagnosed.

I am used to navigating the healthcare system as an EDS and comorbid conditions patient but it has helped enormously being a healthcare professional myself and having awareness of NHS policies, procedures and pathways.

My aim in volunteering for EDS UK is to support anyone in the EDS community needing advice, support and signposting. I feel that having lived experience of EDS myself and within my own family is helpful in supporting others with the condition.

Hi there! I’m Howl (pronouns are he/they).

I’ve lived in Bath since 2021 and am diagnosed with hypermobile EDS and many of its comorbidities.

I found it difficult to get diagnosed in the area so have much sympathy for anyone else struggling with that. In my spare time, I enjoy gaming, going on rolls in my wheelchair and seeing my friends and family. I also play wheelchair basketball!

I’m excited to meet all the local Zebras, especially those who may not have been to a meeting before or are just starting out their journeys.

Email me

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If you need to talk right now, whatever you’re going through, there are people you can talk to any time. You can:

call Samaritans on 116 123 (UK-wide)
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These services are for anyone who’s struggling. They won’t judge you.

They’re free, they’re anonymous, and they’re always open.