Scleroderma affects everything that I do
MY HEALTH EXPERIENCE:A huge problem is that people have never heard of Raynaud’s or scleroderma, relates MEADHBH CLEARY
I HAVE Raynaud’s phenomenon and scleroderma. Raynaud’s is a condition that affects the extremities. It’s estimated that one in 10 Irish people has some form of it, women especially. Cold temperatures and stress bring it on. In most cases, the body is trying to conserve heat. During an attack, the blood is cut off from the extremities in favour of the major organs. Fingers and toes go numb and purple, and it can be extremely painful.
I get ulcers on the tips of my fingers, where the skin is most damaged by the blood loss. The skin can get so tight and hard that it hurts at the slightest touch.
I was first diagnosed with Raynaud’s phenomenon in November 2006. Two fingers on my left hand turned purple while I was on holiday in Prague and stayed that way almost constantly for two days. At the time, it seemed to have come out of nowhere and I was terrified that my fingers were going to fall off, but looking back, there had been other signs that something was wrong.
When I was 17, I got into an unheated pool in Italy and my fingers and thumbs on both hands swelled to almost twice their normal width.
When I got home from Prague, I went to my college doctor. She told me, “It’s a circulatory problem. You need to wear gloves.” So my sister and I looked up the condition online, discovered that it was common for women in Ireland and left it at that. But my Raynaud’s got very severe that winter. I was told about someone in the Blackrock Clinic who specialised in Raynaud’s, so I went out there.
I had blood tests done which came back positive for scleroderma, but I wasn’t told, my consultant just treated the Raynaud’s. Separately, I went to my GP about a sore throat and he looked through my file.
He opened my blood tests and said, “Oh, I see here you’ve got scleroderma”. I had never been told. All he said was, “Oh, it’s an autoimmune condition. You’ll end up with bird-like features. Your hands will curl up like claws and your facial features will get hard and pointy”. I just sat in the car and cried and cried. I was shell-shocked.
Scleroderma is an autoimmune condition which primarily affects the skin. Raynaud’s is usually the first symptom. The translation of “scleroderma” is “hard skin”. The body’s immune system overproduces collagen and causes the skin to stiffen and lose its elasticity. The skin on my hands has stiffened so much that I can’t close them into fists anymore.
There are different types of scleroderma – localised and systemic. My initial diagnosis suggests that it is limited to my skin only, but it could still affect my major organs later. If that happens, it could affect my lungs, so that the tissue hardens or the blood vessels narrow, causing breathing problems. Every case is unique. For some people, it’s a slow, creeping condition. For others, it can all happen in one go.
I realised that I couldn’t go on without understanding what was happening to me, so I transferred to a different GP clinic and made an appointment to see a new rheumatologist, this time in Beaumont, Dr Paul O’Connell.
I bought three patient information books and started to learn. I noticed that I used to waste time feeling shell-shocked during consultations, so now I make a list of questions for my doctor and post them on to him in advance. I also try to keep a diary of symptoms. My consultant brought me into hospital for tests to find out exactly how I was doing.
All of the results were explained to me, which made me feel a lot calmer.
A huge problem is that people have never heard of Raynaud’s or scleroderma. It can be frustrating to have to explain it every time. For example, someone could offer me a glass of iced water and I have to explain that I can’t drink it. Then they ask, “Why not?” and I say that I have a circulatory condition and they say, “Oh, what is it?” and I’m thinking: “I don’t even know your favourite film, it’s too soon to be talking about my medical history!”
Scleroderma affects everything that I do – tying laces, holding a knife – I can’t get a proper grip. I only have about five to six minutes of consistent writing time before my hands became stiff and numb and my index finger develops a concave groove from the pen.
It affects my relationships. You do think, “Well, how many dates should I wait before I bring it up?” because if it gets worse, I’ll need help with things.
Having children is another concern for the future. Scleroderma patients are usually categorised as high-risk pregnancies and there are warnings that the condition can worsen during those nine months. But at the same time you can’t worry all day.
At the moment, I’m just grateful that my health hasn’t interfered with my job, although corrections are sometimes difficult. I don’t like giving back a test with a grade and no direction, so it can take me a while to get through them.
In 2010, I emailed the Irish Raynaud’s and Scleroderma Society and asked them if there was a support group I could join or set up, because I wanted to be able to help other people through the initial diagnosis and share coping mechanisms.
It really makes a difference to sit down and have a chat with someone who understands scleroderma too, without trying to fix it or pretend it will go away on its own.
I have since set up a north County Dublin group and we plan to cover every topic we can think of, from wound care tips to cosmetic cover ups. For anyone out there who would like to get involved in a patient-support initiative, you are very welcome to join us and contribute as much or as little as you’d like.
Irish Raynaud’s and Scleroderma Society irishraynauds.com
In conversation with KITTY HOLLAND