Mother who dislocates her joints 20 times a week now fears her three children has same crippling condition… allowing them to bend their limbs into eye-watering positions
- Sarah Wells has Ehler Danlos Syndrome – her connective tissue is weak
- 38-year-old has dislocated her joints hundreds of times doing menial tasks
- Has been forced to quit her job as a nursery teacher due to the condition
- Believes her 3 children have the condition as they are extremely bendy
A mother who endures the pain of her joints dislocating up to 20 times a week now fears her three children suffer the same crippling condition.
Sarah Wells was diagnosed with Ehler Danlos Syndrome (EDS) two years ago.
The 38-year-old has suffered dislocated joints all her life, and has even popped her wrist out of place lifting a kettle full of water.
Mrs Wells’ EDS means that the connective tissue in her body, which support the skin, tendons, ligaments, blood vessels, organs and bones is weaker than usual.
This means it cannot support the body to do even the most menial of tasks – meaning her bones can dislocate dozens of times a week.
And now, she believes her children, Alfie, 11, Charlie, 8, and Rubie, 5, are all suffering with the same condition – after they regularly manage to twist their limbs into eye-watering positions.
Mrs Wells, from Hillingdon, London, said: ‘I must have dislocated my knee hundreds of times in my 20s, which limits me being able to run about with the kids.
‘But unless I have dislocated a joint and have it strapped up, people can’t really see it so they don’t believe it’s real.
‘There was a time when I dislocated my knee walking into a nightclub with my friends. The bouncer didn’t understand and tried to stop me coming in because he thought I was too drunk.
‘Eventually I strapped up my knee and then went to have a drink. I just got on with it.
‘I don’t tend to pick the kids up as my wrists can’t take it.
‘I don’t have a kettle at home anymore as I can’t lift it when it’s full of water. It puts my wrists out of joint.
RARE CONNECTIVE TISSUE ILLNESS
Ehlers-Danlos Syndrome (EDS) is a collection of inherited conditions, known as heritable disorders of connective tissue.
Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
There are different types of EDS, which can cause:
- joint hypermobility – increased range of movement of the joints
- loose, unstable joints that are prone to dislocation
- joint pain and fatigue
- joints that ‘click’ and are easily bruised
- stretchy skin
- fragile skin tissue
The fragile skin and unstable joints may be the result of faulty collagen.
Collagen is a protein in connective tissue that acts as a ‘glue’ in the body, adding strength and elasticity.
The different types of EDS are caused by alterations in certain genes that make collagen weaker.
In some cases the amount of collagen in the body is reduced.
The faulty genes can be passed from parents to their children.
Source: NHS Choices
‘I can’t write for more than half a page because it causes my thumb to dislocate. There was an occasion recently where I couldn’t sign my own name.
‘My condition doesn’t limit my life span but it does get worse as I get older.’
During her twenties Mrs Wells’ chalked up hundreds of injuries as her knees would dislocate doing normal activities.
Mrs Wells, who worked as a nursery teacher before her condition forced her to quit her job, said: ‘For years, the doctors would not believe my symptoms and in the end I was made to feel as if I was making everything up.
‘The number of misdiagnoses I have had is ridiculous.
‘Doctors have diagnosed me with everything ranging from glandular fever, to strokes and heart attacks.
‘At one point, I was sent to hospital by my GP as they thought I was having a heart attack.
‘When the doctors realised it wasn’t they then thought I had had a pulmonary embolism.
‘After I had children, my health went into a downward spiral. I was a teacher before my health went downhill, but I don’t work anymore.
‘When I was working I could come home and sleep in the afternoon, but once other people depended on me I couldn’t.
She was diagnosed with Charcot-Marie-Tooth disease (CMT), an umbrella term for a group of inherited conditions that damage the peripheral nerves, when she was younger – but knew this didn’t explain all of her symptoms.
Now, she sees her own children suffering the same symptoms she had and believes they are also suffering from EDS.
Her eldest son, Alfie, has already been diagnosed with a connective tissue disorder and her daughter has been diagnosed with CMT.
‘The doctors made me feel like I was making it up and I want it to be different for my children,’ she said.
‘Over the past six months we have been to hospital with the kids more than 20 times.
‘But I have taught them to be positive and always see the glass as half full.
‘The amount of time and money that we have to spend getting to appointments in different places really mounts up.
‘Rubie is very hypermobile and was referred for a wheelchair recently.
‘Because she is so positive, she is looking at it in a good light. But it will upset me to see her in that position.
‘Charlie, my middle child, is also very bendy.
‘I know that I have to help my kids so every day we have a family physiotherapy session where we’ll stretch and do exercises that will help their bodies.’