Head shave in support of research into rare illness
Most people will not have heard of Ehlers-Danlos Syndrome but one woman has been doing her bit to change that.
Charli Edwards of Shrewsbury has been raising awareness of the syndrome, and money for a charity that is funding research into it, in support of her best friend.
Charli's friend Kelly Treherne, 32, suffers with the illness, with her recent hospitalisation inspiring an effort by Charlie to shave her head.
A call for sponsorship on Just Giving has proved successful with Charli raising £585 – surpassing her initial target of £500.
The 32-year-old said that her efforts had also opened up a number of conversations with people who have no knowledge of Ehlers-Danlos.
The condition is a rare illness that affects connective tissues which provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
The NHS says it can lead to an increased range of joint movement (joint hypermobility), stretchy skin, and fragile skin that breaks or bruises easily.
Charli said that Kirsty had suffered with multiple dislocations, chronic pain, and fatigue as a result of the illness.
Charli, whose head was shaved by her partner Nick at his barber's shop in Craven Arms, said she had just wanted to find a way to do something for her friend.
She said: "She was recently hospitalised for three weeks and I could obviously not go and see her because of Covid so was racking my brains for what I could do and because it is not a well understood condition I thought I could do something to raise awareness and money for Ehlers-Danlos research."
Charli normally has fairly short hair but said this is the first time she has ever shaved her head.
After having her locks lopped off she said her two year old had reacted with hesitation but her seven year old thought it was hysterical.
She said: "I was quite excited, I have always been someone who changes my hairstyle quite regularly and this is the one thing I have never done. My husband is a barber so it all made sense really."
Charli said she hoped more people would find out about the syndrome as a result.
She said: "It has given me the opportunity so I have been able to start a conversation with 'next week I am shaving my head' and people ask 'why are you doing that' and I can give them a brief explanation. It is really not understood at the moment so it is great to get that chance and I think Kirsty really appreciates that."
To support the cause visit https://www.justgiving.com/fundraising/charli-fleetwood
