Musings – Today is Rare Disease Day

“I am a rare species, not a stereotype.”
Ivan E. Coyote

Today is Rare Disease Day. It is celebrated this year on 29 February.

Today I am thinking of all those fighting a rare disease and thankful for any and all supports available to those of us who are living with a rare disease.

In many cases when you are diagnosed with a rare disease you feel alone – you have never heard if it, your family has never heard of it, your friends and colleagues have never heard of it either. You spend your time explaining what it is to people and are often exhausted while the person listening is bewildered by all the information.

Often you have no yard stick of knowledge or information against which to measure what you are experiencing. You learn as you go. You have to few options when it comes to trusted online sources and in many places the information is years out of date. I looked up a medical dictionary about my rare disease and it more or less told me I had less than a year to live! You have to be so careful about who and what you trust for information.

In addition to that, rare diseases are most often the poor relations when it comes to research and drug development. If so, few people are diagnosed with your rare disease, then shouldn’t we be putting the research into the area where we can help most people? I would hate to think that is the conversation that is happening about my disease but in many cases it can be.

 Thankfully in the case of my rare disease – Myeloma – we have amazing international organisations like the International Myeloma Foundation which was founded by a patient and her twin sister. I would imagine they did it for the same reason I set up a dedicated Irish myeloma website – to connect, to tell the myeloma story, to raise awareness and to get to work! We are blessed to have the IMF, the Myeloma Beacon, Myeloma UK and The Irish Cancer Society who are leading the field in research, information, patient support, and development of new drugs. 

So to all those battling a rare disease – Happy Rare Disease Day. Remember:

Talk about your rare disease.

Don’t every apologise for being the expert on your own disease.

Tell your story.

Connected with others.

and most importantly Keep Fighting!

Read more about Rare Disease Day 2016

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