Meet The Family Who Are At Risk Of Popping Their Bones Out Of Place Due This Rare Genetic Disease

• EXCLUSIVE: Gemma Coles-Hassan, 34, suffers from Ehlers-Danlos syndrome
• She was diagnosed at age 11, and told there was a 50% chance of passing it on
• But all of her children, Aydan, 10, Theo, 7 and Maddison, 5, were found to have it
• In fact, only her husband Danny doesn't suffer from the agonising condition

Meet the British family who suffer from the same genetic condition that causes them to dislocate their bones.

Gemma Coles-Hassan, 34, from Milton Keynes, Buckinghamshire, was diagnosed with Ehlers-Danlos syndrome (EDS) when she was 11 after years of misdiagnosis.

Despite being told there was a 50 per cent of passing it on, all three of her children were found to be carriers.

Only Mrs Coles-Hassan's husband Danny isn't plagued by the agonising condition, which weakens the collagen in their bodies.

It leaves them all in pain from the frequent swelling that happens, and has stopped them from being normal children.

Mrs Coles-Hassan, whose mother and sister are also sufferers, told MailOnline: 'It's been really hard, seeing the children upset and swelling and dislocating, those bits are the hard bits.

'There's nothing you can do apart from not having children. I'm hoping that they are going to have the same mind as I've got, we have to deal with it the best we can.

'It's about determination I think, it won't beat us put it that way, it makes things hard but it won't beat us.

'Some days you feel there is no end to the hard times then you have a good day and see the smiles on your children faces and their determination and positive attitude give you more fight.'

Genetic testing after their first child Aydan's birth - the only way of diagnosis - found that the now 10-year-old was also a sufferer.

The same procedure happened after Theo, seven, was born.

Doctors said that it would be very unlikely that Maddison, now five, wouldn't be born without the condition.

They were both found to have been passed the genetic condition which is believed to affect one in every 5,000 people.

As a result of the condition affecting the muscles in his tongue, Aydan has speech and language issues and was mute from birth.

He also suffers from bowel problems and vision issues in controlling the movements of his eye muscles.

Maddison's PE lessons are tailored, she doesn't do a full lesson like her peers but she understands the reasons why it's all about pacing and tailoring to the child.

For some symptoms can be relatively mild, while for others their issues can be disabling. Some can even be life-threatening.

The family have learnt to make the best of their difficult situation, which sees the children visit consultant every two months.

Mrs Coles-Hassan says that having a positive mental attitude is key to coping with EDS and she tries to instill this in her children.

The family use special tape to lift the skin away from the muscles and hold joints in place, reducing the chances of dislocations and swelling.

They also have lots of adaption fitted into the home to make things easier for them all, including a full wet room, electric beds and stair lifts.

She added: 'It's a condition that they have for life so they have to deal with it, we try to keep positive but obviously, it is a negative condition but my philosophy on it is that you have to keep control of it because if you don't, it will beat you.

'We hit it head on and take the bull by the horns but we could all be in a very dark place if not.'


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