Living a good life with vEDS
Peter
I live in County Durham with my son and my Border Collie, Angel. I love taking walks with my collie, but it takes time as I suffer from pain in my back and legs. With age, it’s getting progressively worse. I was diagnosed with Vascular Ehlers-Danlos syndrome (vEDS) in 2012 after a four-year journey to get a diagnosis, along with other health issues.
I first noticed something was wrong in the mid-1980s when I took part in a tug-of-war event at a motorcycle rally. After the rally, my whole chest and right arm were covered in bruises. At the time, I thought nothing of it and blamed it on rope burns.
Fast forward to 2007. I had previously been diagnosed with coeliac disease. I was having dietary issues and was sent for a scan to check for problems. This scan revealed a shadow on my liver, which turned out to be an aneurysm on my spleen. I chose to have my spleen removed. This marked the beginning of my journey to diagnosis. I later switched hospitals to get a second opinion, which was positive, and I feel deeply indebted to the team who now look after me. They are, quite literally, amazing people.
I currently have a dissection and four other aneurysms, all on major arteries in my lower body. These are closely monitored yearly. Alongside vEDS, I also live with M.E. and coeliac disease. Despite these challenges, I take a very positive view and avoid anything that could cause complications. I suppose what I’m saying is: you can live a good life, even with restrictions.
If you’ve just been diagnosed with EDS, please don’t think it’s the end of the world – it’s not. For example, make a bucket list, as I have. Even if you’ve done things before and enjoyed them, put them on the list again. One of my major wishes is to visit the Normandy landing sites from WW2 and to drive to Monaco with my son and my collie. I also love railways, so a few museums are on the agenda. I have my Jeep too…see what I mean?
One bit of advice: please remember, there are people out there who will help – just ask.