Why Noah Coughlan Matters To Chronic Pain

Why Noah Coughlan Matters To Chronic Pain

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 Leach

Guy Leach

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).

They are:

  • Complex Regional Pain Syndrome (CRPS)
  • Erythromelalgla
  • Central Pain Syndrome
  • Paroxysmal Extreme Pain Disorder (PEPD)
  • Glossopharyngeal Neuralgia (GN)

For more on these, here’s a story from qualityhealth.com.

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.


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Authored by: Ed Coghlan

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Donna Hoover

Log in after July 15th, to vacamag.com and read the feature I did on Noah.

Many of your questions about Noah will be answered in this article I wrote about him for Vacaville Magazine.

3100 miles! Was this a misprint? Is there followup info, for instance, Who did they reach? or, Who sponsored it?, or, will it be Annual?, or, Did they have a goal? I haven’t done my own research yet, as my own rare diseases, Paget’s Disease of the Bone and Ankylosing Spondylitis, both spinal, are acting up with the summer heat, unfortunately. Not only are they rare but have no cure, are permanent and deteriorating, have only a few treatments that mostly don’t work and have a lot of Pain from all 3 areas, Primary, Peripheral and Radicular pain.

A lot of people don’t realize that pain can come from the bones as there are nerves running through the spongy marrow area and Paget’s causes the bones to grow twisted, with fractures around the vertebrae, so you can imagine the constant, squeezing kind of pain. Spondylitis is an RA disease so causes an arthritic pain to all the joints around the spine including the facets. In my case, the hardest thing, besides the pain breaking through the large amounts of Morphine, Neurontin and Tramadol, is the muscles not “firing” anymore. SO if I fall, I can’t move my arms up to defend the head and chest but once down, I can’t move to get up! (OK, now you are educated to Paget’s)

There has been a lot more studies in the last 20 years but still, very little, because, not enough people suffer from it, so it’s very cool to see someone caring about these diseases. I like the idea of grouping them to get better numbers. We need to group the “Herculean” efforts, like this one, make them annual and get organized to include a budget, sponsors and ADVERTISING!

Thanks Guy, Noah and Ed for your titanic efforts to help people like me. I tried to do what I could 10 years ago and managed to get a lot of press coverage,
( https://www.youtube.com/watch?v=YbKy7UVSrsQ )
but my diseases are deteriorating and I can no longer walk or move much. Also, there was no followup, no organization, so the effort kinda died after the 1st year. I’ve included a video so I can show off a little. (Don’t get to much anymore, lol!)
So this is my advice - Followup!
Thank you so much folks. I pray for you to have strength and support. I sit at a computer all day so if I can be of help, let Ed know. We need more of this! (Well, not this, not many can do this, even if you’re healthy!) And BTW, Noah, welcome to the 200 Mile Club!