I apologise for torturing you with yet more of my ramblings, two days running. However I couldn’t let today go by without at least some recognition. To most people today is just another ordinary day apart from the fact 29th February only comes around every 4 years. However to me and many others today has great significance. You see today; Monday 29th February 2016 is Rare Disease Day, a day which I hope many people will join together to support and raise awareness of rare diseases.
An illness is considered rare in Europe when it affects fewer than 1 in 2000 people and overall more than 6000 rare diseases exist. I am one of the people counted in these statistics, I am a sufferer of rare diseases; I have Ehlers-Danlos syndrome, and therefore it is so important to me that awareness is raised in order to help improve knowledge and education for patients, carers, families and those in the medical profession; as well as furthering research in an attempt to quash the suffering of these 6000+ horrific diseases.
One of the main words which comes to mind when I think of life living with a rare disease is ‘isolation.’ Sadly many with a rare illness doesn’t gain the support or help needed, it can be a very frightening and lonely situation for patients and carers alike when living as a statistic of being ‘rare.’ We are the people who don’t recieve the level of help and understanding we need compared to those living with well know illnesses. Rare diseases are usually genetic, life-long, serious, debilitating, chronic and complex yet many times we are left to manage on our own.
I suffer from Ehlers-Danlos syndrome and a complex neurological illness…I one of the rare. However whilst the situation people face with rare illnesses fills me with desperation and despair, I am not writing this for want of sympathy. In fact the life I live does not need pity; however what I do need is help. Help from anyone who reads this, help to make a difference and spread awareness of the situation from those facing life with a rare disease. We can often feel invisible, our illnesses can feel unseen as no one has heard of the illnesses from which we suffer. But now is the time to break down the barriers of isolation, to remove the cloak of invisibility and for us all to join as a community and do our part to support all rare diseases.
I am so thankful for everyone who reads this and cares enough to support me in something which is so close to my heart. I would really love and appreciate it if you could share my blog post on social media or put the following picture as your Facebook profile picture for the day; I would be so grateful and it would mean more than you can imagine to me.
If you would like to know more about Ehlers-Danlos you can read about it following the links below:
Again thank-you so much; whether you read this, share it, copy a picture to social media or simply tell someone else that today is Rare Disease Day, I am beyond grateful. The more sharing and talking we do, the more hope we have of making a difference and helping the lives of those worldwide suffering for being ‘rare.’
Thank-you & God Bless,