Benefit gig for disability blogger
Local woman Catherine Corbett, who blogs as Cripplebaby, thought that living with pain was part of normal life.
Having experienced pain all though her childhood and teenage years, which was put down to her having hip dislocation as a baby, she didn’t know any different.
‘I always had health issues that were put down to my hip. I always had pain but I felt it was normal to be in pain constantly. I didn’t know any differently,’ says Catherine, who is originally from Ardee and now lives in Knockbridge.
It wasn’t until the pain worsened in her ‘ twenties, that she realised from talking to doctors that she shouldn’t have constant pain and eventually was diagnosed with EDS (Ehlers-Danlos Syndrome) or HSD (Hypermobility spectrum disorder) two years ago, aged thirty.
‘It’s a rare genetic disorder which results in people having faulty collagen,’ she explains. ‘ This means that people with EDS have joints which tend to be hyper mobile and dislocate easily.’
The delay in getting the correct diagnosis means that she missed out on getting treatment in her childhood and she is now planning to travel to London to see a consultant specialising in EDS and HSD.
‘ There’s not much known about the condition in Ireland and although I have seen consultants rheumatologists here, I really need to attend the hypermobility clinic in London, as there isn’t even on EDS specialist in Ireland and as there are a lot of comorbidity issues with EDS, I need access to a team of specialists. I also need to have a MRI in a type of scanner which isn’t in Ireland’
The lack of specialist treatment for the condition in Ireland was highlighted for Catherine when she was diagnosed with cancer, in December 2013.
‘I had Hodgkin’s lymphoma which is curable and it was only then when I was under a team, with nurses telling me that I should inform them if I had side effects from treatment, that I released the difference in the care I was receiving. That sort of thing had never happened to me before.’
Catherine, who blogs about her health and other issues at Cripplebaby.com, says she finds writing ‘ very therapeutic’.
‘ There’s a lot of emphasis put on people with chronic illnesses having a positive attitude and a lot of blame put on people who complain. While no one wants to be depressed all the time, it’s ok to have a rant and say you’re not in a good mood. It’s okay to say you’re not okay, not to be positive 24/7 when you are screaming or vomiting with pain.’
‘It’s also a good outlet for me as I’ve had to give up my work as a youth worker due to my illness.’
Catherine does a lot of volunteering with various charity organisations such as Dundalk Dog Rescue and SOSAD.
‘I like to do what I can when I can and I help various organisations with pop-up shops.’
She has also set up an on-line petition calling for a specialist consultant to be appointed for people with EDS in Ireland.
Catherine’s friend Sarah Hopkins is organising a fund-raising night in The Spirit Store on Thursday night with musicians