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

https://www.ehlers-danlos.com/what-is-eds/

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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.

https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx

Ehlers Danlos Support UK

To learn more about Ehlers Danlos Syndromes there are many resources on this website

https://www.ehlers-danlos.org/what-is-eds/

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Postural Orthostatic Tachycardia Syndrome

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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.

https://www.potsuk.org/

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.

https://www.mastcellaction.org/

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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

List of UK based MCAS Aware Practitioners

(This list was shared with me by Mast Cell Action Charity and I’ve added some extra info they shared with me on there)

https://drive.google.com/file/d/1_vRBASgegeSMfHR2IHCjGjUgYAgFYeln/view?usp=sharing

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Fibromyalgia

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Fibromyalgia Friends Together

Lots of useful resources alongside Facebook Groups you can join

https://www.fibro.org.uk/support/

Fibromyalgia Action UK
Resources to find out more about fibromyalgia
https://www.fmauk.org/

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Migraine

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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

https://www.versusarthritis.org/

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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

https://meassociation.org.uk/

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Action for ME

A charity with information and support about CFS/ME

https://www.actionforme.org.uk/

Is there a charity or organisation that's helped you with your chronic illness journey?

Please get in touch to let me know and I'll add it to this page in case it can provide further info for others searching for answers

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Chronic illness insights, tips & resources