Stevie

I saw that they looked up EDS on
google and printed out a Wikipedia
page to give any doctors that would be treating me

Hi. My name is Stevie and I am a 19 year old university student.


I was nine years old when the problems really began. I got an injured wrist, believed to be a sports injury (even though I rarely played sports), that never got better. At the time I thought “oh, I’ll be okay in a few weeks” but no, my body wouldn’t allow that.


I went to a rheumatologist over this and he diagnosed me with tennis elbow and carpal tunnel syndrome. This was undisputed until the pain kept on getting worse.


Meanwhile, other problems were constantly popping up- pains in other joints, severe headaches, constant nausea, the list goes on. I was diagnosed with an autism spectrum disorder aged ten and everything was put down to anxiety due to autism. However, my family and I knew that there was a more serious underlying problem.


Our major breakthrough came along when my mother was at a meeting. She was talking to another person at the meeting who told my mother about EDS. She came home and we googled it (even though we all know that “Doctor Google” isn’t the best source of information). We could tick almost everything on the symptoms list. Then we knew what we were pursuing.


We went to a rheumatologist in Crumlin and we questioned EDS with the doctor. I got responses like “Look, I’m hypermobile too!” and that I wasn’t “bendy enough” to have EDS. After a few appointments, the hospital moved an appointment back six months. Needless to say, we never went back.


We put in a complaint about said doctor and sent letters to the doctor in question. We got replies back. My mother got the best response. It said “We do not diagnose EDS because it engenders fear and anxiety in parents”. My response to that is this: the whole family was even more anxious while none of us knew what was wrong.


The rheumatologist referred me to my local HSE physiotherapist who was blunt with me and fobbed me off saying “no lack of strength, no lack of movement, not my problem.” We now have to pay privately for a physiotherapist who is EDS aware.


Through some research we came across Dr. Mulcahy in Cork. My mother asked my GP to refer us to him and the GP rolled his eyes. However, we got our referral and the rest is history. When we went to see Dr. Mulcahy, it only took one appointment to get a diagnosis of hEDS. He thought my blood pressure was a cause for concern so he referred me to a cardiologist for tests.


Before we went to see the cardiologist or get any tests done, my health took a dramatic turn for the worst. I was constantly “zoning out” so I was brought into accident and emergency. They kept me in and it turns out I was epileptic and having absence seizures. That hospitalisation was especially scary when I saw that they looked up EDS on google and printed out a Wikipedia page to give any doctors that would be treating me.


A few weeks later I got to get the tests and cardiologist appointment I was waiting a few months for. The tilt table test was (and still is) one of the most unpleasant things I have ever done. I was upright for 5-10 minutes before I fainted on them. My blood pressure had gotten dangerously low and my heart rate had rocketed. After that, we saw the cardiologist. He was a very nice man who went out of his way to make me smile, and who listened to all of my concerns. He diagnosed me with POTS and did his best to improve my condition. Unfortunately, he emigrated and switched me to a doctor who was absolutely clueless about EDS.


I was referred to London by Doctor Mulcahy and had my first appointment in the summer in 2016. This was around the time of the new EDS diagnostic criteria, so I was rediagnosed based on that and referred to more medical professionals. Over the next year I had many tests and appointments such as a physiotherapy assessment, pain psychologist appointment, upright MRI, cardiology appointment and subsequent autonomic testing (including tilt tables with and without food, exercise stress test and a 24-hour monitor).


Around this time, I started getting mysterious difficulties with my wrist. The whole hand was locking in a sort of claw that would last anywhere from ten seconds to three hours. The pain in my hand was getting worse and even when it wasn’t locked movement was restricted. Nobody could explain what was happening to me. It still happens but not as much as it used to.


We went to England again earlier this summer. This time I needed another 24-hour monitor, which I wasn’t expecting. The activities I had to do with the monitor really drained me, but they were necessary. I’m still seeing a cardiologist in London, but I need more testing over there which we simply cannot afford at the moment. I need to be tested for mast cell activation disorder and need gastrointestinal testing.


The tests I have gotten in England should be available in Ireland. People with EDS and their families should not be forced to spend every cent they can gather together in order to pay for necessary medical treatment and to have to prioritise their issues according to their budget, while issues that go untreated continue to worsen.