Useful Information
I thought I’d create a page with some useful resources that I’ve referred to and that have helped me along my chronic illness journey.
Ehlers Danlos Syndrome
Ehlers Danlos Society
To learn more about Ehlers Danlos Syndromes there are many resources on this website
Ehlers Danlos Support UK
To learn more about Ehlers Danlos Syndromes there are many resources on this website
RCGP Ehlers Danlos Diagnosis Toolkit for GPs
This resource may be useful to look through before suggesting to your GP that you think you may have EDS. You can share the link with them to read up on if they don’t have much knowledge of the condition.
Postural (Orthostatic) Tachycardia Syndrome
PoTS UK
So many useful resources across their website that I referred to a lot following diagnosis. They also touch upon hEDS and MCAS on here.
Mast Cell Activation Syndrome
Mast Cell Action
Diagnosis with MCAS is difficult because there are no NICE or NHS guidelines. This charity was amazing in providing support and advice for investigating a possible diagnosis with MCAS.
Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome
Link between Mast Cell Activation Syndrome and COVID-19
https://www.sciencedirect.com/science/article/pii/S1201971220307323
UK based and looking for Mast Cell Aware Consultants?
The list I previously shared is out-dated as consultants can change their stance. Please reach out to Mast Cell Action - they'll ask questions about your case, location etc and pair you with the most suitable consultant for you.
Email: info@mastcellaction.org
Fibromyalgia
Fibromyalgia Friends Together
Lots of useful resources alongside Facebook Groups you can join
Fibromyalgia Action UK
Resources to find out more about fibromyalgia
https://www.fmauk.org/
Migraine
Migraine Trust
Resources about migraine and support
https://www.migrainetrust.org/
Arthritis
Versus Arthritis
I don’t have arthritis but it can be a co-morbidity of EDS and I’ve done reading up on it and found this website super informative
Arthritis Action
Many resources on arthritis. I actually project managed the videos for their online self-management resource when I was working at my previous film production company!
https://www.arthritisaction.org.uk/
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
The ME Association
Lots of useful resources to discover more about the condition and its effects and get support
