After being diagnosed with Complex Regional Pain Syndrome (CRPS) back in 2016, I relied on my healthcare and clinical (medical) research knowledge to learn as much as I could about this condition. One of the very first things I learned was that CRPS is a rare disease. (1) And because it doesn’t affect all that many people, CRPS doesn’t get much research funding, or much attention at all.
There’s even – still – quite a bit of confusion about what exactly CRPS is, in part because its name has changed so many times over the years. When I first received my diagnosis, for example, I was told that I had Reflex Sympathetic Dystrophy (RSD) – but that name for CRPS was more than 20 years out of date at that point! (2)
Even among healthcare professionals, there’s often a lack of even the most basic awareness of CRPS; what its symptoms are, in which situations it’s most likely to occur, and which people might be most at risk. That lack of awareness about CRPS isn’t simply an inconvenience for people awaiting a diagnosis, it’s downright dangerous for patients struck with it, because:
Failure to treat early may result in lifelong pain, loss of function, or even amputation; unemployment and prolonged disability are common… Early treatment can lead to near resolution of the syndrome and the prevention of long-term pain, loss of function, and disability.” (3)
Yes, it’s that serious! A quick diagnosis with CRPS, and rapid treatment, are crucial to avoiding the amputation of limbs (the arms and legs), permanent disability, and other truly horrid outcomes of CRPS. It took me almost three months to get a diagnosis, despite my repeated visits to the orthopedic surgeon to whom my post-fracture care had been assigned at a local community hospital.
Instead of considering what might be going on with my body from a medical perspective, this physician instead dismissed my symptoms and ignored the clinical signs (observable changes) that should have quickly led him to diagnose CRPS.
During that period of almost 12 weeks, my CRPS had time to progress (from the fingertips of my right hand to well above the wrist) – and to become entrenched. A quick series of 6 day-surgery procedures – all within 10 business days by another specialist – stopped my CRPS from spreading any further after that, but the damage was already done.
Worse, because the disease is both an autoimmune condition and a neuro-inflammatory disease, I was then struck with a CRPS-related Mild Cognitive Impairment (MCI) at the end of 2018… which forced me to step away from my beloved career and my dream job in bioethics.
It’s almost impossible to describe how much CRPS and the related MCI have negatively impacted my life, my husband, my family, and friends. Not only that, but I also have to live with the knowledge that if I hadn’t had to fight for almost 3 months to be taken seriously by that one doctor, my CRPS might have gone away. I’d still be able to work in a job I loved, I wouldn’t be living every day with severe chronic pain, and I wouldn’t feel sometimes that I was a burden to the people I love.
Almost as soon as I was diagnosed with CRPS and learned how important it is to quickly obtain a diagnosis – and to rapidly start treatment – I decided to try to raise awareness of this rare disease myself. It might be too late for me, I thought, but what if I could prevent someone else – anyone else! – from experiencing the anguish that I had to live through. Most disease awareness campaigns focus on public education, for example the importance of blood pressure testing to detect this treatable but deadly condition.
With CRPS though, I felt that it was more important to raise awareness specifically among healthcare professionals – the people who needed to be able to recognize the signs of CRPS were the very ones who should be diagnosing it. Without a physician’s diagnosis of CRPS, after all, it’s impossible to receive treatment for it.
One of the tools that I had at my disposal, for awareness-raising, was the amateur nature photography that I’d been doing before CPRS entered my life. People like to look at photos, and many of us like to read (short!) stories… so I combined the two – into an awareness-raising tool.
I’d take interesting photos of hospital treatments, of nature, of medical centres, and I’d post them across social media with snippets of information about CRPS. Here on the blog, I added an entire section devoted to CRPS; when I started this blog back in 2007 it was about bioethics… and blogging was so new that people used to ask me, “What’s a blob?” ‘-)
In 2018 one of my photos was accepted for a juried community art exposition in the main entrance hall of a large university hospital centre, and I used my allocated text as a CRPS awareness tool. Any healthcare professionals, researchers, or trainees in the hospital who stopped to look at my photo and read my “biography” would learn about CRPS. How cool was that?
At the “Vernissage” or opening evening of that art show, a number of people told me that they’d just learned about CRPS for the first time – from my text. And that they thought it was a wonderful way to raise awareness of a rare disease, within a hospital setting. Whether through my volunteer activities as a Patient Partner with the Canadian Pain Society, or the Physiotherapy Association of Canada, or other groups, I’ve continued to use photography for CRPS awareness.
So when I decided to learn to paint, earlier this year, I planned to eventually do the same with my paintings. I’d thought it would take a year or two, before I could use my watercolours for CRPS awareness, but I’ve been very pleasantly surprised.
Last month I donated one of my watercolour paintings to a charity auction, to benefit a local hospital foundation, and someone bought it. As part of my Artist’s Statement, attached to the back of the frame, I’d included information about CRPS; it’s likely that the people attending this hospital auction are in some way affiliated with the healthcare centre. How’s that for an example of “art for awareness” of this rare disease?
Well, today I got more good news on that front. A few weeks ago I submitted two more of my watercolour paintings for an upcoming online charity art auction, in collaboration with The Women’s Art Society of Montreal. An I’ve just been advised that both of my paintings have been accepted by the jury. All funds raised will benefit the Rotary Club of Westmount “to continue our support of those in our community who are most in need”, “the homeless, the hungry, the poor, and abused women and children”. Definitely worth my support.
After helping a local hospital foundation last month, by donating one of my artworks, I’m now helping another community organization by donating two more of my paintings. I’ll again include information about CRPS with each of them, hopefully raising awareness even more.
As always, thanks so much for stopping by! This has been a longer post than I’d planned; because November is CRPS Awareness Month I decided to share some of the impacts of this disease on my life – something that I don’t do all that often.
Stay safe, keep well, and look after yourself. The world is better with you in it ‘-)
I’d love to hear from you over on Instagram or Twitter, as I’ve had to disable the Comments here on the blog; it got to be too much for me to manage, because of my cognitive issues.
References
(1) Genetic and Rare Diseases Information Center (GARD). Complex regional pain syndrome. National Center for Advancing Translational Science (NCATS); National Institutes of Health (NIH); U.S. Government. Webpage. Updated 09 Jan 2017. Online. Accessed 03 Nov 2021:
https://rarediseases.info.nih.gov/diseases/4647/complex-regional-pain-syndrome
(2) M. Stanton-Hicks, W. Jänig, S. Hassenbusch, J.D. Haddox, R. Boas, P. Wilson. Reflex sympathetic dystrophy: changing concepts and taxonomy. Pain, Volume 63, Issue 1, Pages 127-133. 1995. ISSN 0304-3959. doi.org/10.1016/0304-3959(95)00110-E. Online. Accessed 03 Nov 2021:
https://www.sciencedirect.com/science/article/abs/pii/030439599500110E
(3) Winston P. Early Treatment of Acute Complex Regional Pain Syndrome after Fracture or Injury with Prednisone: Why Is There a Failure to Treat? A Case Series. Pain Res Manag. 2016;2016:7019196. doi:10.1155/2016/7019196. Online. Accessed 03 Nov 2021: