Rare Genetic Condition For Newborn Twins

A rare genetic condition makes twins’ skin extremely delicate; even the seams of their clothes cause their skin to blister, tear, and peel off.

19:03 15 October 2015

Leanne and Martin Pearson are dealing with their twin’s rare genetic condition that causes their skin to blister, tear, and peel off easily. The condition has no cure.

 

Leanne, 27, said: “We first realised there was something wrong when Jordan was passed to me within moments of him being born,”

 

“He had been crying and rubbing his feet together.

 

"As I held him, I realised he had taken all the skin off one of his feet.

 

“The staff knew something was wrong and both Hunter and Jordan were taken away.

 

“We didn’t see either of them for 36 hours after that.”

 

Hunter and Jordan were kept at the neonatal centre at James Cook University Hospital, where they were diagnosed with Epidermolysis Bullosa (EB), a rare condition that causes the skin to blister and tear at the slightest touch.

 

Leanne said: “I’d never heard about it until the twins were born.

 

“It means that the proteins that your body needs to bond your skin together aren’t there.

 

“Even the seams on their clothes can cause blisters.

 

“Longer term, it can affect the whole digestive tract because it becomes that scarred inside.

 

“They were in the neonatal at James Cook for nine days because nobody knew how to treat them. Of all the people in the hospital, there were only one or two who had even heard of EB.

 

“I had the twins on September 29 which was Tuesday. On Wednesday, the hospital contacted a specialist team from Birmingham and by Friday, they had arrived.”