Helen

is creating support, awareness and education for our amazing CRPS family :)

2

patrons

About Helen

Hi! You’re here for a reason - either you have CRPS, you know someone with CRPS, you’re a medical professional who wants to help patients with CRPS, or you’re just plain curious. Whichever it is - thank you for being here!

Whether you pledge the minimum $1 (74p), a few pounds a month or a hundred (I am NOT expecting that! 😂), your support is amazing and allows me to give you more! Everyone who supports me here is contributing to what I do for the group as a whole, so no one will miss out - but as a Patreon supporter you will have access to all the new content here first - you will see it a day before it goes on the blog or Facebook page.


I’m a 47 (ouch) year-old mum with a degree in earth sciences and an unfulfilled longing to climb volcanoes!
I’ve had CRPS - the world’s most painful disease - for nearly seven years. It seems like an eternity and I find it hard to remember what it felt like to be a ‘normal’ person, with a job and social life, who understood the concept of no pain! My pain scale of 0 to 10 has now completely lost 0 to 3, and my best day starts at a 4. That does some very odd things to your body’s  perception of the world.

I started an amazing support group 18 months ago on Facebook called CRPS talk & support UK 💚. I love running it and feel immense pride at the fantastic online community that we have become. The group is my life (as most of the members will know, lol) and I spend many hours a day there or behind the scenes, making sure that it is a wonderfully supportive and special place, and also giving many of our 700+ lovely people private support 🙂. I also maintain our Twitter account, write our blog and send out the unique hospital leaflets that I created to help improve our hospital stays.



I’m very passionate about CRPS. It remains a hugely misunderstood condition which can often be both distressing and isolating, and this can be made worse by the attitude of some of the people we know - even health professionals - who don’t understand it as well as we do! The incredible support within this group helps all our members to cope with CRPS and its mental and physical health challenges, and to live the best life that they can despite the pain and disability it can bring. Having other people who understand how you feel, especially when nobody else does, can be the most important factor in pain management and in finding ways to improve your overall health.

ON THE WAY: As well as the things I mentioned above, I’ll soon be offering free video or phone ‘Mindfulness for CRPS’ sessions (I’m in training at the moment), and I’ll be doing videos (yikes!) discussing various aspects of CRPS and its treatments and meds, more blog posts, and also hopefully some interviews (through the magic of the web!) depending on how brave some of my membership feel!

RESEARCH: I hope soon to also progress the research I told the group about last year, which has over 100 participants already dedicated to helping. This is well into the planning stage but will involve a lot of time and energy to complete to a high standard - which your support will help me to do. That research will ultimately help with both medical and psychological understanding, and shed a little more light on the possible factors of CRPS development.

LEAFLETS: I also long ago planned a range of leaflets for the group, continuing the very popular and helpful Ward Staff leaflet which will continue to go out free to all members as and when needed. The GP leaflet was almost complete when unfortunately the designer had to cease his involvement, and I only got the files back recently. To avoid this happening again, I will be getting the software myself and will produce the other leaflets as planned. Leaflets to come will be on many topics, including employment, education and the mental health aspects of CRPS.

I will be keeping the group the amazing place it is, and developing it even further so that we can achieve more for the CRPS community 🎗. We all want there to be more awareness of this horrible, challenging and still misunderstood condition. Your support will enable me to continue this work as far as imagination, funds and energy allow! 💚 Thank you 🙂.
Goals
2 of 20 patrons
With just 20 patrons I’ll get the software to enable me to finish off the long-awaited GP leaflet! Once that is printed and ready to despatch to members, I’ll be able to start on the next leaflet in the series - which you’ll be able to vote for!
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