Craig Coady has suffered for years with a rare condition, EDS Type 3, which has no cure. He speaks to Jess Boyd in this exclusive interview.
Craig Coady from Canford Heath has suffered for years with a rare condition that has no cure. In fact, it took doctors eight years to diagnose EDS Type 3.
Ehlers-Danlos syndrome (EDS), hypermobility is a connective tissue disorder, where the person suffering with it experiences significant complications such as dislocations of the joints, chronic pain, fatigue, muscle complications and more.
I recently interviewed 30-year-old Craig, and he told me what it was like to be living and dealing with this complex illness, and how he copes.
For years, Craig had been living in confusion as to what he was actually dealing with. Bound to a wheelchair most of the time and feeling constant chronic pain and fatigue, doctors were baffled.
“It was horrendous,” said Craig. “There was no proper diagnosis so I was given no proper help. You feel like you’re crazy and no one believes that you’re ill – that’s one of the worst parts of it.”
Craig received little support up until five years ago, when he was finally given a diagnosis for his condition: Ehlers-Danlos Syndrome Type 3.
Living with this illness is nowhere near easy, with symptoms that make living life to the fullest a lot harder.
“I get chronic pain and fatigue, as well as my muscles cracking too much. In flare-ups, there’s nothing much I can do. I try to relax and watch TV but it’s hard. I don’t take medication because it doesn’t work,” explains Craig.
There is no known cure for EDS. Many attempts to help Craig have failed with some even worsening his illness. Craig says doctors struggle to help, “it’s almost like they just guess.”
Craig was referred to the orthopedic hospital three times to help him cope; however, this wasn’t very successful. “You have to strengthen your muscles. But when I went, my legs were actually overworked. They felt worse than before, my knees felt weaker and it was agony walking. I had to be bound to my wheelchair more and more.”
Many people Craig saw were very confused by the symptoms and although he has been finally given a diagnosis, there is still much he doesn’t know about his condition, which is extremely painful.
But, there are wonderful ways in which Craig copes.
He has a passion for music and frequently teaches the ukulele at a local café. “It’s very rewarding” Craig exclaims. “I feel like I’m giving something back, inspiring people of all ages is just amazing.”
Music is just one of the ways Craig adds happiness and joy back into his life. He also gets through by meeting and knowing others around him who are going through the same thing.
“I think it’s so important for me to know people who are going through this too, because they can understand and relate to me. Sometimes when my friends ask me to go out in the evening, I can’t because of fatigue. It’s useful having others who know just what I’m going through,” he says.
But, despite the growing number of people diagnosed with Ehlers-Danlos Syndrome and similar conditions, awareness and help available is still very limited. Many are uneducated about the daily struggles that the illness brings, and Craig wants to change this.
“I think it would be great to organise some type of event to help those like me who are affected by the condition,” he says.
As well as this, Craig wants friends and families of those affected to have more knowledge and awareness. “It’s important they understand what we are going through. That would really help.”
There is an EDS helpline at firstname.lastname@example.org and support at www.ehlers-danlos.org