A-why-ness month (29.11.29)
What’s the point? Why have I been posting daily messages about CRPS to Instagram and Twitter? And occasionally to other social media – all using visual images that I created using photos I’d taken? How can this possibly make any difference in the world?
I just realized that my message today, on Twitter, distilled the answer to these questions down to the bare minimum. This need for brevity, to keep posts short, is one of the things Inlove about tweeting!
So here it is:
Slipped on a patch of ice in in 2016
Colles’ fracture, clean break
No surgery needed
Bone healed well⤵️
➡️Signs & symptoms of #CRPS appeared within days of fracture, yet diagnosis took +-3 months⤵️
So my #CRPSAwarenessMonth aim is for this not to happen to anyone else…
The hashtag acronym #CRPS stands for Complex Regional Pain Syndrome. Many physicians still use this disease’s old name; Reflex Sympathetic Dystrophy, or RSD.
That makes the next hashtag fairly obvious, right? #CRPSAwarenessMonth is meant to raise awareness of this rare neuroinflammatory and autoimmune disease.
CRPS usually starts in a person’s hand & arm, or their foot & leg. It can ‘jump’ to the other three limbs, and it can spread to other parts of the body.
It causes horrific neuropathic (nerve) pain, changes in the hair, nails, and skin in the affected area. The joints in these areas are affected as well, and the bones. And there can be problems with movement, like tremors or trembling.
And it’s really important for this disease to be diagnosed as quickly as possible. The longer it takes to get a diagnosis, and to start treatment, the more likely a patient is to have a worse case of the disease.
First off, because it can spread while a patient wait for a diagnosis. Next, because the longer the joint damage goes untreated the more likely is to be irreversible. Thirdly, because all the other signs & symptoms are likely to get progressively worse over time.
Now lets go back the the question I asked at the start of this post, about the impact of my daily CRPS awareness messages this month:
“How can this possibly make any difference in the world?”
I’ve received direct messages, from 2 physicians and 3 patients, that they were able to recognize the signs or symptoms of CRPS – because of my posts.
That 5 patients were diagnosed with CRPS, and so able to start treatment. To put a name to what was happening to them, to their bodies.
And those 2 clinicians now what CRPS looks like, and how nasty a disease it is. One of them plans to do a presentation about CRPS, to other physicians at her hospital. Making it more likely that patients there will be diagnosed more quickly, because more doctors will know about it.
When I started creating CRPS awareness images for this month, I’d hoped to help at least one person. To make a difference in the world for one person. So I’m very happy to have been able to help these 5 patients get diagnosed; one waited almost 2 years to find out what was wrong.
So guess what I’ll be doing again, next year?!