I know I have complicated conditions that will be really tough to live with no matter what, but I do believe my symptoms have been exacerbated by the lack of understanding in the Irish health system.
My name is Salt, I'm 35 years old, and I was diagnosed with EDS in 2017 after years of health problems.
Originally from Sweden, I moved to Ireland in 2006 and have been here since. I love this country, but navigating the health system certainly hasn't been easy.
My journey to an EDS diagnosis was hard and strenuous, and eventually I was diagnosed only because I did research myself and pushed and pushed to get answers. We had a service offered by the company I was working for where you could send in your health queries / scans etc to a foreign company who would consult expert doctors all over the world. I sent in over 50 pages of investigations, MRI images, blood tests etc, and got an answer weeks later from 3 different doctors who all said this could all be related to EDS, which I wasn't yet diagnosed with. This lead to me asking my GP for a rheumatologist referral, and this rheumatologist then diagnosed me with EDS. It took 9 years of health investigations in Ireland to get a diagnosis, and to be honest not much has changed in terms of support since then.
Back in 2009 I was diagnosed with Chiari-1 malformation, which, if I simplify somewhat, means the brain is too big for the skull, so mine was being pushed out at the back of the skull. This was putting pressure on the brain, and I was suffering from pain, nausea, brain fatigue, tingling in arms and legs, and a hard time walking at times. I had decompression surgery in March that same year at Cork University Hospital, where they removed half of the first vertebrae and a bit of the skull at the back to leave more room for the brain and release the pressure. It took A LONG TIME to recover, and it was very tough. Instead of the surgery taking only an hour or so, it took almost 8 hours since i kept almost waking up on the table. I wasn't diagnosed with EDS yet, but I now know that not reacting well to anaesthetics is a common thing for people with EDS.I ended up in a dangerous situation having to be under anaesthetic for much longer than planned since the doctors, specialists and nurses didn't know to take this into account.
To be honest I get quesy just thinking back to that time. Eventually I did improve though, and most, if not all of my symptoms went away for a few years.
I, however, did continue to struggle with aches and pains, vertigo, gastrointestinal issues, and much more in the next few years. But all I wanted was to have a career and normal life, so I did my best to just get on with things, whilst staying healthy, exercising and eating well. I did struggle more than I'd like to admit though.
In 2015 I was on a hiking trip and accidentally stepped into a hole at the top of a mountain area. I felt something snap in my knee, but knew I had to get back home so I ignored it. I walked downhill for another 4 hours, and worked for 2 days until I admitted to myself that something was seriously wrong. I went to my GP who sent me straight to the emergency department. They found my ACL (cruciate ligament) had snapped, and I had damaged the knee further by walking on it after (whoops). By this time in my life I had gotten quite used to ignoring signals from my body, since things were hurting randomly all the time anyway. After weeks of physio I was ready for surgery, but it was much tougher than expected. The pain was horrendous, and my knee never fully healed. I had a similar issue with the anaesthetic as the previous operation, and although I was told I would not feel any pain when waking up, I woke up with absolutely horrific pains in my knee. I now know the reason my cruciate snapped so easily, and the reason the healing didn't go as planned, is likely due to my EDS, which still was not diagnosed at the time.
The years following my knee surgery I developed pain all over my body, but mainly in my hands and feet. I was also having a lot of stomach issues, throwing up sometimes after meals and never having functioning bowel movements. In desperation I started doing my own research online, as mentioned above. After pushing my GP for answers, I was referred to a Rheumatologist, who diagnosed me with EDS in 2017. It was a massive relief, since it could explain so many of my symptoms, but where could I go from here? I wasn't given a lot of guidance, and just told it would affect me in different ways for the rest of my life.
I put my head down and did my best to just get on with life. I was working as a Team Manager for a company in Cork at the time, but me and my husband were looking for a change of scenery, and I was lucky enough to find an amazing job in Galway, so we moved here in 2018. I adored my job, but my deteriorating health was getting more and more difficult to ignore.
Unfortunately, my health has continued to get worse, despite my efforts to simply use willpower to just get on with things! In June 2020 I was bending down to clean my guinea pig enclosure, and I felt something "snap" in my lower back. I didn't think much more about it, but my back started hurting a few hours after. I continued to work for a few weeks, often standing up to manage the back pain. However, it got worse and worse, and eventually I was sent to the emergency. I was admitted to hospital for 10 days since I lost the ability to move my legs fully, but despite numerous MRIs of my spine, they say they haven't found anything to explain the pain and loss of function. I've asked about the Chiari, as I'm worried about this possibly causing some of my symptoms, but there is no Chiari expert available to review my MRIs.
I got to see a rheumatologist late 2020 who has helped me see the importance of rest and structure when living with my conditions, but she herself has admitted that although she has worked on learning about EDS, there is no EDS expert in Ireland, and she would not count herself as one either. She did get me in touch with a great physio that I see regularly, and I do physio every day. Despite this, I've had constant severe back pain for almost a year now, with no end in sight. I've also lost some function in my left leg, and I walk funny and can't do things like lift my left foot up out of a shoe.
At the end of 2020 I got to see a neurologist who confirmed there is a disconnect between my brain and my left leg. The nerves work fine, they just don't respond as they should when I try to move the leg. Unfortunately my follow-up appointment with the neurologist has been postponed as he's stuck in London due to Corona and Brexit, and I'm not sure when (if) he'll start seeing patients in Ireland again.
Within the space of a few hours - I went from taking 1 hour long walks each day to barely being able to walk for 5 minutes without crutches, and I now need help at home with the most simple of tasks.
This year the vomiting also got a lot worse, and I've been diagnosed with gastroparesis, which means partial paralysis of the stomach. I've been told it's most likely linked to my EDS. I haven't been able to eat a proper meal this year, but can only eat small bits of food, and I still vomit most days. I've lost 10kg so far, and every week I lose a bit more.
A specialist Consultant recently told me that there isn't good healthcare available for either EDS, Chiari or Gastroparesis in this country, and that since I have all three this is really going to be a struggle. We've spoken about options of going to other countries for investigation and care, but there's so many complicated questions with that - how could we afford it? Who could come with me to help? How would we manage in Corona-times?
Throughout my journey, I've been put on a number of medications by GPs, pain specialists and others - antidepressants, nerve blockers, muscle relaxants etc, but no one was ever there to follow-up with me to see if the medicines were helping, or if they caused me more issues. This lead to me taking several medicines with severe side effects for years, since I simply took what doctors recommended. After seeing my new rheumatologist, neurologist and gastroenterologist in the last 6 months they all recommended I try to come off most of this medication. I'm now only on light medication for nausea and stomach, and nothing else, and to be honest I feel much better since I'm no longer suffering the multiple side effects. Additonally, several of the medicines I was on can make gastroparesis worse, but despite complaining about vomiting for years no one ever made a connection.
To summarise, I know I have complicated conditions that will be really tough to live with no matter what, but I do believe my symptoms have been exacerbated by the lack of understanding in the Irish health system.
- What if they'd made the connection when I was diagnosed with Chiari and understood EDS and its effects then?
- What if they'd known about, and understood EDS when I hurt my knee. Could they have done a different treatment plan and recovery plan so that my knee could have healed better?
- If my GP and other specialist had any knowledge about EDS - could I get better support day to day?
- If we had someone in Ireland who was an expert in my conditions, could I get the help I need to start working again and have a decent quality of life?
I havent been able to work since July last year, and right now I'm simply trying to survive each day, struggling though the pain, vomiting, weakness, brainfog, and inability to manage simple tasks on my own.
I have an amazing husband and family to support me, and I'm grateful for so many things in my life. But I'm scared. Scared that I'll get worse, and scared that there's no one there to connect the dots and figure out what's wrong. Scared that there's no one in Ireland knowledgeable enough about my conditions to help me. Right now, I just take one step at a time. One at a time.
If you reside in or are from Ireland and would like to submit your story of living with EDS/ HSD, email: