West London
Helen and Monifah
My name is Helen and I am really happy to be joining as an area co-ordinator in West London. I have lived in London longer than I have lived anywhere else, but my accent is still very Scottish! I have been living in West London for the last 6 years.
I have Hypermobile EDS, as well as a few co-morbidities, including Orthostatic Hypotension and ADHD. I was diagnosed in 2021, aged 41, after a lifetime of symptoms and unexplained pain and illness. Like most of us, I’m constantly re-evaluating what I can do and how much I can do, but it’s helped by finally knowing what is happening with my body.
I work for a charity, and I am a qualified trainer. I train alongside people with intellectual disabilities and/or autism, so making sure they are included in conversations is a passion of mine. I also am very interested in neurodivergence in general, and even more so with how it is linked with connective tissue disorders.
I’m really looking forward to meeting some fellow Zebras in West London.
My name is Monifah and I have Hypermobile EDS & Sprengles deformity each which play hand in hand with each other which has meant I’ve spent the last ten years trying to adjust to my new normal and at 20 years old that hasn’t been easy.
My goal for being area coordinator for West London is to help any young people feeling misplaced or confused with finding a way forward.
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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)
text SHOUT to 85258 (UK-wide)
call C.A.L.L. on 0800 132 737 (Wales only)
These services are for anyone who’s struggling. They won’t judge you.
They’re free, they’re anonymous, and they’re always open.