August 22nd 2013
5 years have gone by since being diagnosed with the rare affliction that is Vascular Ehlers-Danlos Syndrome.
I thought about writing a long post in my usual format of an article, but to be honest, I’m pretty tired and getting through the working day is enough these days. Instead I’m going to share with you 5 things that I have discovered over these first few years.
1) Vascular Ehlers-Danlos Syndrome kills. I have seen many lives lost in the past few years, some of these people I have spoken to, some of these people I have met. Each time a life is lost, even if you don’t know that person, you feel the loss.
2) Even with a diagnosis, there’s not a great deal of help. Care is often uncoordinated, disjointed, and you find you have to be your own advocate. In times of emergency, whilst everyone tries their hardest, there is a great lack of knowledge and awareness.
3) There’s so much more to Vascular Ehlers-Danlos Syndrome that just the physical aspects. Mentally, coping with such a diagnosis can be bizarre. It gets easier as time goes on, but still there is always the underlying fear of the unknown which is not something that can be described easily.
4) I am not alone! The community is outstanding. The people who share your predicament can save your life. A wealth of knowledge and experience. A world of information. A community that comes together in your time of need and helps you no matter who or where you are. Courageous people, working hard to make a better future for generations to come.
5) Life goes on. …and indeed it does. Somehow, we have to find our way out of the darkness, push down that fear and face the world again,. No matter what happens we will continue forward and be the best that we can be in whatever we do, in both this life and the next. We are the universe!
Vascular Ehlers Danlos Syndrome: The Journey begins
In one single moment, everything can change. What lurks inside the deepest depths of David Malarky threatens his entire existence….
Vascular Ehlers-Danlos Syndrome: The Journey Begins charts the story of David Malarky as he uncovers a truth that has gone undetected in his family for generations. An unknown monster with the power to take a life in the blink of an eye.
As David unmasks the savage beast within, he must come to terms with the consequences of being diagnosed with a rare genetic disorder. With little help and little hope, he must overcome and fight back in the challenge to stay alive. The journey begins..