Rare Disease Day 2015

Rare Disease Day February 28, 2015

Today we take note of Rare Disease Day, every year on the last day of February we raise awareness for rare diseases and the impact that it has on the lives with those that are suffering all around the world. This has been the case since 2008, founded by Eurordis and their council of National Alliances. The hard work and effort has made a contribution to the improvement of policies and plans for rare diseases in different countries.

I really wanted to make a contribution this year, and hopefully I can continue to do so, and what better way than to diverge a little bit more about my rare condition. I have something that is called Ehlers Danlos Syndrome, it is a connective tissue disorder in which there are defects in the biological tissue, collagen, that protects organs, supports the joints and generally holds you together. There are six major types of EDS, all are really rare but I have the most common type, hypermobility. This affects me in many ways, I suffer frequent dislocations and subluxing on a daily basis, my entire digestive tract has low motility, I struggle to keep solid and liquids down due to really nasty nausea and my weight is really low to mention a few things (because I could write you a very long list).

[caption id="attachment_38" align="aligncenter" width="280"] A few of my weird and wonderful bends.[/caption]

I did want to highlight how much of an impact it has mentally, how it affects my quality of life rather than how it affects me physically. Ehlers Danlos Syndrome to me is a prison, it keeps me from being able to maintain relationships with friends and family, unable to communicate or contribute in intellectual discussion, unable to work and get a sense of achievement or an income and generally the feeling of depression becomes so overwhelming that I sometimes don't know what else to do but cry. This illness affects every aspect of my life and has done for years now, and in the future I will touch more on the subject, but for now I wanted to keep it short and sweet.

In addition to the physical and mental impact, I still have responsibilities and commitments just like everyone else and that can be really stressful when you have a body that won't even run at half of its capacity. There are phone calls to arrange necessary appointments, filling in countless forms with what seems to be an endless amount of pages, an assortment of hospital appointments to attend every week, not to mention all of those other events that life throws at you, and somewhere between all of that I have to find the time to rest and make time for a life.

A few slides from an EDS conference

My ill health has taken a lot from me, but it isn't going to be like that forever. I have accepted that this illness will stay with me for the rest of my life, but that won't stop me from doing everything in my power to live the life that I want to live. Someday I will be on top of this illness and able to manage it, and I hope that one day I can help others do the same with theirs. What is important is to keep fighting, to keep educating and raising awareness of invisible and chronic conditions. Our invisible needs to be made visible, health professionals, researchers, policy makers in particular need to be shown what life is like for patients suffering with long term health conditions. One day I will stop having around sixty to seventy hospital appointments a year and I will be able to get back to work, and be more attentive in my relationships with my friends and family. Finally, I shall finish this piece with a beautiful quote by a Buddhist leader and philosopher that I find to be very useful in difficult times.

Strength is Happiness. Strength is itself victory. In weakness and cowardice there is no happiness. When you wage a struggle, you might win or you might lose. But regardless of the short-term outcome, the very fact of your continuing to struggle is proof of your victory as a human being. - Daisaku Ikeda

P.S. For anymore information on Rare Disease Day 2015, click here, or alternatively if you would like more information on Ehlers Danlos Syndrome please open this link here.