Why Rare Disease Day is important to me

Today is Rare Disease Day. This day is for everyone with rare medical issues to spread awareness of their various conditions, and to take pride in our differences. Ehlers-Danlos syndrome is a connective tissue disorder -we produce faulty collagen to be exact. Simply put the glue that holds our joints together over stretches and so our joints easily sublux and sometimes even fully dislocate. On the other end of the joint hypermobility spectrum is Hypermobility Spectrum Disorder. These complex conditions can effect so many parts of our bodies, but for many of us the main symptom is chronic pain. EDS has 13 subtypes, and while EDS itself is seen as a rare disorder, Hypermobility Ehlers-Danlos Syndrome (hEDS) is the least rare (and the most common) form. Because of this hEDS may be viewed as a rare condition, while others view it as simply "rarely diagnosed". It's also rarely known -by the general public and my medical professionals. Rare Disease Day reminds us to show the world our zebra stripes proudly; to stand up and be counted amongst a group of individuals who usually go unnoticed. 

Ehlers-Danlos Syndrome: A message to the newly diagnosed

I first wrote this piece for Irish EDS & HSD as part of EDS awareness month in May, and thought I would share it here too. See the original article here:

If you are newly diagnosed, hope you find it helpful. 

And if you do have either EDS or HSD and would like to write something for the Irish EDS & HSD page, please get in touch through IM'ing the Facebook page!

________________________________________

For anyone that has been newly diagnosed with Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder, I know you must be feeling a mix of emotions -afraid of what the future holds, but also relieved that this long mystery has finally been resolved. Like many sufferers, like in my case, you may have waited years for this part of the puzzle to be answered. Now you’re faced with even more questions, and you may come to realise that there isn’t a lot of medical help in Ireland. This makes the future even more daunting than it was before.

You could be wondering what was the point in fighting for a diagnoses all this time, what was the point if there is no cure and you’re surrounded by specialists who tell you they are not qualified, ask you to spell the condition, or are just very dismissive in general. 

I know you’re tired, but I promise things get better. Here’s how I have coped the last few years since my diagnoses:

A big cripple baby thank you

Apologies in delays in getting this up, and apologies also for it's shortness -my fingers are in a right state at the minute, so writing and typing is very difficult. I'll do a post tomorrow on health updates.

Without further ado however, a big thank you to my bestie Sarah for organising a recent fundraiser in our local town -The Cripple Baby Gameshow, hosted by musicians and general funny men TPM.


Which took place in The Spirit Store (cheers Mark and Derek!). In what as an amazing night, full of devilment, cheese and laughs, the event raised a massive €1,600! Which will go a huge way towards my treatment and tests in London. The raffle received a massive response with donations from -

3rdPlace

Ardú

Bloom’s Flowers Dundalk

Classified Records

Cullen’s Emporium

Elephant

Eskays Bistro

Joseph Edwards Studio

Justin Casey Salon

Lisdoo Bar & Restaurant

Michael Smyths

Niamh Maguill

Pinstripe Punk

Simon B. Music

The Gakk

Bellurgan Park

We, The Oceanographers 

Secondly, thank you to the contestants and everyone who helped out on the night in so many various ways, and who donated or helped out with props! - (in no particular order) Emer, Serena, Dara, Sarah, Tasha, Breanainn, Christina, Evan, Nikita, Kyle, Mark, Romeo, Anthony, Charlotte, Frankie, Fahy, Isabel, Mr. Price for donating decorations and Conlon's Food Hall for the yummy curry.... Forgetting a million of individuals I'm sure, there's a few people that I don't even know that helped out in all sorts of ways! A massive thank you to all, and to everyone who came along of course, from the bottom of my heart.