Shaving our head fully bald for EDS UK!

Shaving our head fully bald for EDS UK!


+ estimated £34 Gift Aid
£1,000 target

78 supporters


£2 + est £0.50 in Gift Aid on 4th Jan 2021 14:16

Started on 12th December 2020 Burghfield, England, United Kingdom

MY STORY LIVING WITH hEDS (TYPE 3)1607809622_c1f383de-c42c-490a-b0a2-98bec70c3157.jpeg1607808826_2e1f6287-3054-466c-8b9f-f1c1325e662a.jpeg

In October 2020 I was diagnosed with a rare, incurable disease called Hypermobile Ehlers-Danlos Syndrome (Type 3). It’s an incurable connective tissue disorder which affects my joints, skin, organs and can be very painful. It can be inherited from a parent with the same faulty gene, alternatively someone can be born with a new mutation so that the condition is occuring in their family for the first time.

Issues that may occur in someone who has hEDS are stretchy & fragile skin, frequent and recurring joint dislocations, chronic pain, sleep disorders, chronic fatigue, GI issues, PoTS, digestive disorders, pelvic and bladder dysfunction, and anxiety disorders. These are often more detrimental to quality of life than the joint symptoms.

For me personally, recurrent dislocations and chronic pain & fatigue has affected me most - leaving me wheelchair bound and having to wear lots of joint braces when I do daily activities.

I’ve chosen to shave my hair to raise money for this EDS charity so that more awareness and research can be put into the search for a cure, or even just better treatments. EDS has no cure and can be really daunting for people, I think it’s important that rare diseases are spoken about more and there’s a huge lack of funding put into them. 


India Walker commented

Thank you to everyone for making this possible. As a system with EDS, your support means the world to us & makes things seem a little less dismal. We’ve officially hit our £1000 target and we’re over the moon - thank you

5th January 2021 at 12:16am
Daniel commented

love you guys!

4th January 2021 at 5:04pm
daniel pledged £20
4th January 2021 at 5:03pm
Anonymous pledged £2 + an est. £0.50 in Gift Aid

4th January 2021 at 2:16pm

The Dream Wanderers commented

Hi the Bluebell system ! Neptune from the Dream Wanderers system here, wanted to tell you all that you have been an inspiration for us, much love from France !

4th January 2021 at 2:00am
Lorna Attwood commented

Love your TikTok, stay strong!

3rd January 2021 at 10:51pm
Anonymous pledged £20

31st December 2020 at 5:23am

H Cooper pledged £5
30th December 2020 at 7:35pm

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