Why do I spend so much of my free time raising awareness of CRPS? Of Complex Regional Pain Syndrome, formerly called Reflex Sympathetic Dystrophy (RSD)? Whether by blogging, creating poster-style images, presenting/speaking, or other means?
Why is it important for me to increase awareness of this neuro-inflammatory & autoimmune disease, particularly within healthcare environments? Not for my sake, but for others’!
Because if a person who is struck with CRPS is diagnosed – and treated – quickly, they have the best chance of getting better. The longer someone with CRPS goes without diagnosis, the harder it will be to treat the disease.
CRPS can settle in, and become resistant to treatment, with time. And it’s already a condition that clinicians say is difficult to manage. Patients with this disease can have any – or all – of a wide variety of symptoms, which means that no two patients have the same experience of CRPS.
In my case, my medical specialists and I have tried well over 20 different treatments – in less than 3 years. This is why I’ve created a couple of CRPS awareness images focusing on this aspect; the lack of effective treatments, of any modality that seems to help all CRPS patients.
As an example, this image is a [one-handed smartphone] photo of some of the medications that have been tried – and failed – for my own set of CRPS signs & symptoms.
Because I’m hoping to increase awareness among clinicians, therapists (occupational, physical, etc.) & researchers, many of my images include references to articles in medical & scientific journals. Using photos I’ve taken within hospitals & other healthcare facilities.
Why focus on healthcare professionals? Because these are the folks who need to be aware of CRPS – in order to diagnose it!
That said, I also do impromptu one-on-one – or small group – awareness raising for people who work in fields with higher than average likelihood of injury. Firefighters, members of the military, police, and veterans.
For these impromptu information sessions, I have help from… a very small stuffed animal! I do a lot of biking, using only one hand/arm because my right side is affected by CRPS. So I get a lot of questions on my cycling technique, from other cyclists.
When another cyclist (or group) is interested in why I ride one-handed, I offer to stop for a moment and explain what symptoms they should look for if they – or a friend – suffers a fracture or other injury. I have to stop often, to rest my CRPS-struck hand & arm, so I really don’t mind extra stops on my rides!
Then I pull Max, my tiny little CRPS awareness-raising & cycling buddy, out of the pocket of my jersey; that’s a biking shirt, with 2 or 3 small pockets across the small of the back. Max offers to pose for photos with the cyclists, while I do a 2-minute symptom summary:
“The most common trigger for this disease is a broken wrist, but it can also appear suddenly after any fracture, injury, or even surgery…”
You may have noticed, here on the blog or across social media, that I also raise awareness of rare conditions – and of chronic pain in general. This is because CRPS is considered to be a rare condition, in most parts of the world. And CRPS is managed as a chronic pain disease.
The latter is the reason I attended the 2018 annual scientific meeting (conference) of the Canadian Pain Society (CPS), as a “Patient Partner“.
November 5th is CRPS Awareness Day, which coincides this year with the start of Canada’s National Pain Awareness Week (NPAW) organized by the CPS. So I’ve agreed to participate in NPAW, for all chronic pain patients, using the hashtag #NPAW2018 on social media.
And CRPS groups are hoping to use the rest of the month of November, to build momentum by extending CRPS awareness day into an awareness month.
The ‘colour’ of this disease is orange, so keep an eye out for folks wearing that colour on November 5th. And now throughout the month, because the organizers have decided to extend the awareness-raising period this year.
If you use Instagram or Twitter, look out for these hashtags over the next little while:
- #CRPSawarenessDay
- #CRPSorangeDay
- CRPSawarenessMonth
- #NPAW2018…
Next up, in terms of global awareness of CRPS, will be the International Rare Disease Day. That isn’t until the last day of February each year, so this month I won’t be posting much for that event!
As always, thanks so much for reading 😉