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Helena's Story

Helena's Story

My name is Helena and I am from Kilkenny, I have Vascular Ehlers Danlos Syndrome. I, along with my 2 younger brothers, was diagnosed as a child by Prof Andrew Greene in Crumlin Children’s Hospital, by way of a skin biopsy.

When I first met Prof Greene, he was able to tell by looking at me and by knowing my family history that I had EDS.

EDS had played a devastating role in my family and my life up to this point. My Mother (aged 29) passed away from an aortic aneurysm when I was 5. Years later, my aunt past away from an abdominal aneurysm.

At the time, there was no mention of EDS. Later, another family member was diagnosed with Vascular EDS, following many issues. This then lead to my diagnosis.

As a child, I was always full of unexplained bruises. I dislocated my knee following minor accidents. I was also diagnosed with Pulmonary Valve Stenosis at a young age. My brothers experienced Pneumothorax (collapsed lung), which was also linked to EDS. They too bruised very easily and experienced dislocations.

"EDS had risen its ugly head yet again in my family

Sadly, I lost my two brothers in December 2007 and April 2008. Stephen, aged 20, passed away following a sudden aortic aneurysm. Adrian, aged 18, passed away following a minor surgery on his lung for a pneumothorax. Both died very suddenly and unexpectedly which left me and my family completely heart broken. EDS had risen its ugly head yet again in my family.

Following the loss of my brothers, I suffered a lot with anxiety; my world was turned upside down. I was helped through this with a lot of support from my family, friends and my GP. I would often get leg cramps, which leads to bleeds in my legs, swelling, bruised from knee to toe and left unable to walk until the bleeding and swelling stops. Recently, I have been diagnosed with Intermittent Claudication in the artery in my groin

This was so frightening when the symptoms first appeared. I could not walk even 10 steps without my leg feeling numb, heavy, weak and very painful. My GP was excellent and got in touch with Mr. Ciaran McDonnell, Vascular Surgeon, in the Mater Hospital. Mr. McDonnell seen me straight away and performed numerous scans, tests etc. He was very pleasant and surprisingly he knew quite a bit about my condition. He informed me of my situation in a very informative way. However, he told me that he did not want to perform any surgery, as the risks with having EDS were too high.

We agreed on that! Surgery was out of the question unless my symptoms worsened and as a last resort he would do surgery. Worst-case scenario if that happened was I lose my leg. Thankfully, a year on, I’ve had no more problems with my leg, even though the problem remains.

I have regular check up with my cardiologist, vascular surgeon and my GP. Thankfully, I’ve been very well with no major problems thus far. I try to be very careful not to get a fall, bang, lift heavy items or put myself at risk of a bleed etc. Which in itself is quite hard!

I try to remain positive and lead a normal life as best I can. Having EDS is a worry and the lack of knowledge within the Health Care System of the syndrome is also very concerning.

EDS has played havoc with my life, my mind, my family and my emotions but I continue to live life, celebrate everything, stay positive and fight on as best I can.
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