Health experience: ‘I never think about tomorrow’

I was diagnosed with Ehlers-Danlos syndrome (EDS) only five years ago when I was 18. But I had the symptoms from an early age. I’d be awake every night crying as a little child. My father would have to rub my legs because the pain was so bad. The doctors said it was growing pains.

EDS is a connective tissue disorder. Some people with the illness just have it on the outside but what I have can make me very sick. Because of the lack of collagen in my skin, everything is very stretchy and saggy. I can break bones and dislocate bones very easily.

On top of that, I have osteoporosis. The lack of collagen means that something like a simple paper cut can take weeks to heal. Also, I have very poor muscle tone. People mistake me for a 15 year old. I’m tiny and slightly built. I have more bone than muscle.

When I was on holidays five years ago, I had bowel obstructions. I had to go to hospital every nine days to get my bowel drained. I was in a lot of pain. My stomach would swell and I’d look about eight months pregnant.

Then my weight dropped to 4½ stone. I had to be hospitalised and loads of feeding tubes were stuck into me. I have one at the moment going from my nose to my bowel. That’s because I have severe gastro paresis where food doesn’t move past the stomach.

I was treated for different things and had to go to the Princess Grace Hospital in London to get my diagnosis. When I was told what I had, I felt a great sense of relief. At least the doctors actually knew what was wrong.

Pacemaker
I have a pacemaker in my bowel. I'm waiting on a gastro pacemaker for my stomach. Hopefully, when that's put in, I'll be able to eat again. There's a 50/50 chance it will work. If it doesn't work, I'll have to have my colon and bowel removed and I'll be fitted with a colostomy bag.

At the moment, I have to stay away from food because it’s hard to digest. It’s hard having the feeding tube in because it’s obvious to people when I’m out and about. I weigh only about six stone but I should start to put on weight when a special nutrient will be put directly into my blood system.

I’m in a lot of pain. I’m on 38 tablets a day because I have a lot of other conditions. I have Raynaud’s disease which is restricted blood flow. It means my fingers and toes are constantly cold. I have a heart condition that results in very low blood pressure.

I have an ectopic heart beat, I have severe reflux and my hypoglycaemia means my blood sugar can get very low and I can literally just pass out.

The type of EDS that I have affects me chronically internally. From the outside, you wouldn’t really know I had the disease, apart from my skin which is snow white and translucent. The internal type of EDS is more rare than the external one. But EDS is very rare anyway.

I have friends on Facebook who have EDS. The Facebook page is great for support. There are about 49 of us with different forms of the disease. I can ask people if they have the same problems as me. The doctors have no clue about it. We have to learn about EDS ourselves before we see a doctor so that we can tell them what's going on.

I have a fantastic doctor at Cork University Hospital who is always researching EDS for me. There’s no cure for it; it’s about managing it. It’s a real pity that we have to go to London for a diagnosis. That’s because it’s a very costly process. My mom is the main carrier of the EDS gene. My sister and brother carry it too.

"The hardest thing for people with long-term illnesses like mine is that we have to go through A&E every time we need to go to hospital. With no collagen in the skin, trolleys are not good for me because I get bed sores. If there was direct admission to hospital, it would be a lot easier. But unfortunately, that's not the way it is in Ireland. It is in England.

Hospital
At my age, it's hard being in hospital. I have to go into hospital a lot for iron infusions as I'm anaemic. I can't take iron tablets because my bowel isn't working. I make the illness revolve around my life rather than my life revolving around the illness. I was sick when I was at school so I had to be home schooled for a while. That meant I lost contact with friends. That's hard.

I don’t drink alcohol but everything seems to revolve around it so it’s hard for me to make new friends. But I always feel there’s someone out there worse than me. I never think about tomorrow. I try to enjoy life day to day.

The morning is my best time. I go for a walk with the dog, get a few things done and rest in the afternoon. I have to go to hospital two to four times a week. My mom is very good to me. She takes me somewhere every day so I’m never bored. Hopefully, when I have surgery, it will help keep me out of hospital.

In conversation with Colette Sheridan