This is so cool, in a sad kind of way… I’m excited because of a news item, in Canadian media, about someone who has the same disease that I do. It’s a rare medical condition, which isn’t well-known even among physicians. So it’s a surprise to see it mentioned anywhere, other than within patient groups or specialized medical journals!
Seeing something about this disease, in our local news, was really unexpected. By local, in Canadian terms, I mean from the next large city to Montreal; Toronto. About 550 km (350 miles) away by road, a drive of about 5 hours! [Canada’s such a vast county that local takes on a different meaning than in smaller countries; like most of Europe.]
It’s very important to get news coverage of this rare and often misdiagnosed disease, to raise both awareness and interest. Awareness, to prevent other people from being misdiagnosed; the way I was for almost three months. Interest, to increase the likelihood of future research to prevent and potentially treat it.
What is this rare neuro-inflammatory and autoimmune condition, which causes a host of symptoms including excruciating chronic pain? Complex Regional Pain Syndrome (CRPS), although it’s often still referred to by its old name; Reflex Sympathetic Dystrophy (RSD).
Before I post a link to this news story, I want to tell you that my condition is nowhere near as bad as that of the young woman profiled in this report. Some of the highlights of this news piece, for me, were statements by physicians.
Not because I feel that clinicians’ views are somehow more important than what the patient and her parents have to say, but because the former might be more likely to impact other physicians! Throughout my career in biomedical ethics (bioethics), and since 2016 as a rare disease patient, I’ve seen this play out – time and time again; many doctors pay more attention to what other physicians say than they do to what their own patients tell them.
Giving more credence to other physicians, than to patients who’re living with symptoms, is likely one of the causes of some misdiagnosis. Or missed diagnosis.
This is some of what the physician interviewed, in this news report about someone with CRPS, had to say:
Dr. David Shulman, a pain specialist who focuses on CRPS, says the syndrome is kind of a mystery…
It’s not clear how people get it but it usually is believed to be caused by damage or malfunction of the central nervous system, which controls most functions of the body and mind…
The telltale symptom of CRPS includes continuous and constant pain that usually gets worse rather than better over time…
It’s a very odd disease…
There is no cure for CRPS.”(1)
And that last line summarizes why I’ve been trying to raise awareness of CRPS. To someday find a cure, or better yet – a way to prevent this life-changing medical condition.
And in the meantime, to prevent other people from spending agonizing years – without a diagnosis and so without any kind of appropriate treatment. To avoid having other patients struggle to obtain a diagnosis when they knew that something was wrong; as I had to do, for an agonizing three months…
Reference:
Emanuela Campanella. “Living with CRPS, an excruciating chronic pain condition that can ‘happen to anyone’.” Global News, a division of Corus Entertainment Inc. Corus News. Internet. 21 May 2017. Accessed 22 May 2017. Web: