Over the holiday weekend, Guy Leach, a man who follows the National Pain Report on Twitter, urged us to cover a national Run for Rare Disease that was concluding at Ocean Beach in San Diego on July 4th. A man, with the distinctly interesting name of Noah Coughlan (spelled almost identically to mine) started a run in New York City (at the Statue of Liberty) on February 28th to promote awareness about the 7,000 rare diseases that get little attention, don’t have a cure and often don’t even have a treatment. He ran 3100 miles. It’s the third time that this Vacaville, California man has performed this Herculean feat.
My first thought was I run a pain news website, what does Noah Coughlan’s effort have to do with my audience.
Quite a bit as it turns out (and I should have known that)
Guy suffers from Complex Regional Pain Syndrome (CRPS). He met with Noah Coughlan when the Race for Rare stopped in Oklahoma City – which gave Leach a chance to talk about what he calls “the most painful chronic pain condition.”
Guy Leach, who serves in the U.S. Air Force at Tinker Air Force Base in Oklahoma, made the point in an interview with the National Pain Report that “Noah puts a face on rare disease like ours, we are real people and more and more folks are starting to realize it.”
In that list of 7,000 rare diseases, five main chronic pain maladies emerge (and honestly there are probably more).
- Complex Regional Pain Syndrome (CRPS)
- Central Pain Syndrome
- Paroxysmal Extreme Pain Disorder (PEPD)
- Glossopharyngeal Neuralgia (GN)
Back to Sgt. Leach and his CRPS. As it often does, it started innocently enough. He suffered a sprained ankle and foot. Six months later, when it wasn’t healing, a doctor finally told him he had CRPS.
Here’s Guy’s story from the Oklahoman!
“I didn’t know what it was,” the West Virginia native said,”but the lack of information about CRPS and how the medical community address it has turned me into an advocate.”
Back to Noah Coughlan. He has a documentary team following him. We should see that soon.
He is a hero – giving voice to people who don’t have a voice.
It will be fascinating to talk him with him in the near future.
I have lots of questions for him.
What inspired you to do this?
What do you think you are really accomplishing?
And, most importantly, why don’t you spell your last name correctly?
Thanks for your effort Noah.
Thanks for pointing it out, Guy.
Here’s a video on the Run For Rare.
follow us on Twitter: