Rare Disease Day 2014

I am writing this post to promote “Rare Disorder Day”. There is a whole website devoted to this effort, and it is international in scope.  I’m including a link to the website below.

Lately my daughter Deanna and I have cranked up our efforts to spread the word about her two rare disorders, Dystonia and Narcolepsy.  These are only two of the 6-8,000 rare diseases identified around the world.  According to the Rare Disease Day website, a disease or disorder is considered rare in Europe when it affects fewer than 1 in 2000. In the United States, it is considered rare if it affects fewer than 200,000 Americans at any given time.

Given that most of these conditions are extremely difficult to diagnose – and most go misdiagnosed or completely undiagnosed for years – you can perhaps see the dilemma.  There is a lot of real human suffering going for a lot of people, and not a lot of time, attention, or funding being devoted to alleviating any of it.

And when I say a lot of people, I am not just talking about the actual patients.

For every individual who has one or more of these disorders, you can add at least two people who are affected by it – that person’s parents.  Speaking from experience, regardless of a patient’s age, parents and other family members are affected by this one individual’s health issues. So are their friends, classmates and co-workers (assuming the sufferer is lucky enough to be able to work and actually has a job).

So this is my attempt to raise some awareness among those who know me, or who follow me on Facebook or Twitter. I hope you will take some time to check out the Rare Disease Day website and increase your awareness, and perhaps take some time to share what you learn with others that you know.

In the coming weeks I am going to be updating my “Antipandemonium” blog to reflect a shift towards posting information exclusively related to the way in which chronic disease and rare disorders affects our lives specifically. I will also be adding links to organizations that provide support.

Paraphrasing Marlo Thomas in her appeals for St. Jude’s, give thanks for your health and the health of your friends and family, and give (your money, your time or just your attention) to those who are not.

Thank you and God bless.



About bonniejpreston

Life is an adventure. Make every day count. Enrich the lives of those you meet along the way. Don't show up at the end with a wish list. Invest in your health - the dividends paid are priceless. Listen at least twice as much as you talk. Enjoy the journey. Namaste
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