Debbie describes her body as a “ticking timebomb” and has bravely spoken out about the devastating illness which has blighted her life and killed her teenage son.
Debbie hopes to raise awareness of the little-known Ehlers-Danlos Syndrome (EDS) by raising money for desperately-needed research and ensuring other sufferers are diagnosed as quickly as possible.
Now 46, Debbie had a life expectancy of just 32 and she and husband Rob lost their only son, Ryan, when he was just 17. Now she is resigned to the fact that the syndrome will claim her life too, but she and Rob remain positive despite knowing it could strike at any time.
“It is one of those situations where you either laugh or you cry,” said Debbie. “We are laughing, but with wobbly knees. It’s not going to go away if we are miserable, but I do feel I am on a fine line and I am not here for much longer – I dread going to sleep.
“I am 46, one of the very few and very lucky ones who have made it so far. More than 80 per cent develop life-threatening complications by the age of 40.”
There are different kinds of EDS and Debbie suffers from the vascular type, which means unexpected and sudden internal bleeding is a constant risk. Symptoms include fragile blood vessels leading to spontaneous bleeds, thin skin and dislocation of joints.
Debbie was brought back from the brink of death in 2012 when an aneurysm on her splenic artery ruptured and other frightening episodes have left her weak and gradually more dependent on others. She now spends most of her time at their specially-adapted home while husband Rob runs Sign It! and Cam Auto Centre in Poole, UK, both of which employ disabled people.
The couple were advised against having children for the sake of Debbie’s health but when she fell pregnant she was determined to continue with the pregnancy. “She was booked in for a Caesarean at 36 weeks and I was warned ‘you might be about to see your wife die’ at the time,” said Rob.
“It was difficult when he was little but it never entered my head that he would die before me
Ryan had a 50-50 chance of having EDS and it soon became apparent that he had inherited it.“They did tests after he was born but I already knew because he bruised so easily,” said Debbie.“It was difficult when he was little but it never entered my head that he would die before me.”
Sadly, Ryan died in October 2009 after suffering a Spontaneous Aortic Aneurysm Rupture.
Debbie is keen to ensure symptoms are recognised so that people can be diagnosed as early as possible and has set up a justgiving page in memory of Ryan to helpful fill his dream that one day Ehlers-Danlos Syndrome would be consigned to the history books!