Former model battles debilitating condition

CLARE girl and former model Lorraine McCarthy was recently crowned the Face of Therapie Clinic, after a three-month nationwide search.

 

Lorraine, originally from Newmarket-on-Fergus, now lives in Limerick. The 27-year-old, however, no longer models as a result of a disorder called Ehlers-Danlos Syndrome (EDS) or hyper-mobility syndrome (HMS) and related health issues.

The disorder is genetic and according to EDS Awareness Ireland “is caused by a defect in connective tissue, the tissue that provides support to many body parts, such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen.” Collagen is a protein that adds strength and elasticity to connective tissue.

There is currently no cure for EDS, which can be difficult to diagnose.
“I’m actually still kind of learning about EDS myself because I was only diagnosed with it a few months ago and there’s still very little known about it in Ireland,” explained Lorraine.

“I would have been going to doctors for the last good few years trying to get a diagnosis and I’ve heard of a lot of different conditions but when EDS was said to me, I had never heard of it. They say it’s one in 15,000 but I don’t actually think that’s correct because I’ve made contact with the EDS Ireland support group and there are only maybe 60 members in it.

“It’s a connective tissue disorder and it affects the collagen so it’s kind of like the glue that holds your body together that is affected. It’s genetic so I would have been born with it. I suppose, initially, I was a late walker and I would have been very double jointed and then, more recently within the last couple of years, I was having chronic pain and I was having a lot of different symptoms. It got to the stage where I just couldn’t function anymore,” she recalled.

Having EDS means Lorraine’s joints are beginning to partially dislocate. “It’s from the slightest thing, just getting up out of a chair my hips can partially dislocate and there is a loud popping noise. It can be any one of my joints. This is getting a little worse, so down the line I’m optimistic there is going to be more they can do. But a lot of people need wheelchairs or braces or things like that but so far I’ve managed.”

Lorraine was forced to give up work. She was in pain but was hugely frustrated because doctors couldn’t tell her what was wrong with her. She was diagnosed with fibromyalgia, which causes chronic pain as well as related symptoms, including fatigue, cognitive dysfunction and reduced physical function.

“I went on medication for that and I just felt there were still an awful lot of symptoms that it didn’t account for. Thankfully I have a fantastic GP in Limerick and she was very supportive, very understanding and she was really eager to get to the bottom of it as well.

“I continued meeting with consultants and specialists and being heard. I was up in Dublin in the National Centre for Medical Genetics and it was by ruling out conditions that they came to the conclusion. It was so obvious to the person that diagnosed me, maybe if I had met her day one… It did take a very long time and it’s a horrific process trying to get a diagnosis sometimes when you’re dealing with people that aren’t familiar with you,” Lorraine outlined.

Lorraine also suffers from Raynauds Syndrome, which can cause discolouration of the extremities because of restricted blood flow. She began taking photos of the discolouration in order to show doctors what was happening.
“That’s actually why the consultant referred me to a specialist because I had an unusually severe case of it. It affects your circulation, so my feet or my fingers can go black and purple or white, like frost bite almost,” she said.

“The frustrating thing was that it wasn’t always necessarily like that, so I could be like that in the morning and I could go into the doctor’s office an hour later and it would look perfectly fine. So, until recently, most of the symptoms were completely invisible. That can be very frustrating because obviously you look like you are healthy.

“I don’t have to rely on a wheelchair or anything like that so far. I will have to start maybe looking into braces and supports soon but one thing this has really taught me is not to judge a book by its cover because you don’t know from the exterior what someone is going through,” Lorraine continued.
According to Lorraine, a combination of the EDS and Raynauds Syndrome means “high heels aren’t an option anymore”.

“I could only wear them for maybe an hour. But that’s the least of my problems. I did a bit of modelling with Celia Holman Lee but I had to finish that up due to my health… With modelling you can’t be limping around.”

Lorraine’s social life is also restricted. “It is just not worth the risk. I would love to be able to do more things. I used to exercise a lot but now I have to be very careful. It has to be low resistance because certain exercises would just be way to dangerous. To be honest, it is a catch 22 because with the fibromyalgia, when you exercise it strengthens the muscles and can actually give you energy but with the EDS  if you exercise it can pop out a joint. It can damage you so that you are in awful pain the next day.

“Even going out, I just don’t anymore. It is not worth it. For starters I wouldn’t be able to go anywhere that doesn’t have a chair. I wouldn’t be able to stand up for a long period at all. I would have to take medication at a certain time and I would definitely be looking for my leaba if it was getting late.
“But, you know, going back to when I was modelling I was a very social person and I almost feel like I have kind of been there and done that so I don’t feel like I am missing out on that much,” she added.

Lorraine is keen to point out she is not trying to relaunch her modelling career but is delighted with being named the Face of Therapie Clinic.
“Getting back in front of the lens for this is a once-off. It is a fantastic opportunity because the prize package is €9,000 worth of the skin treatments from Therapie Clinic. I went in there for the first time recently and met with them and they could not have been nicer. I had a skin analysis done and with the EDS, my skin has become extremely sensitive in the last six months. It can rip and it’s quite raw. There are products and treatments that were discussed with me that may be able to help. It’s definitely not a cure for anything but it will benefit me,” said Lorraine.

She is busy preparing for her wedding to fiancé Darragh next year. She believes having someone to talk to is vital for anyone struggling with chronic pain or other ongoing symptoms.
“If it wasn’t for him, I wouldn’t have my diagnosis as I was so exhausted and tired of all the tests by the end of last year that I was ready to give up on getting a correct diagnosis. He was so supportive every step of the way and I think it is so important that anybody suffering from chronic pain or illness has somebody they can talk to, be it a friend, partner, family member, support group or anyone because it can be too much to deal with by yourself. My dad, Kevin; my older sister, Grace and sister, Tara were amazing too and very supportive,” she explained.

Lorraine is particularly grateful for the understanding shown by her family and friends when it comes to events.
“There have been situations where friends and families make arrangements and, if I am just not up to it, I have to say it and that can maybe come across the wrong way but you just have to put your health first,” she said.

She is optimistic about the future. “I think as time goes on there is always different research being done and different medications coming out and, hopefully, something will be done for the chronic pain,” she concluded.