Last week I told you why I was so happy to find “zebra hoofs” (boots) at a shoe sale, and how the zebra became a symbol for rare diseases.
Wearing zebra print items sometimes is one of the ways I raise awareness of rare diseases, including my own. It’s important for me to spread knowledge of these conditions, because when more people know about a disease it becomes more likely that its symptoms & clinical signs will be recognized.
It can often take years for someone living with a rare disease to get an accurate diagnosis, so this lack of recognition of ‘zebras’ is a big problem.
During the time that a person is living without a diagnosis, one of 2 things is probably happening – in terms of their treatment. A patient with an undiagnosed rare condition is likely to receive either:
- Inappropriate treatment(s) based on recommendations for another disease; or
- No treatment because their condition simply isn’t recognized; the doctors aren’tsure that anything is wrong.
So each time I can talk to someone about my own disease, I see that as raising the odds that another patient’s symptoms will be recognized more quickly than mine. That they won’t spend so long wondering whether they’re ‘going crazy’, while waiting for a diagnosis.
How did my new zebra hoofs (boots) help me increase awareness of my disease; Complex Regional Pain Syndrome (CRPS), also still called by it’s old name, Reflex Sympathetic Dystrophy (RSD)?
Because these boots are very hard to miss, I get a lot of comments about them when I wear them. They’re very striking.
Each time someone says something about these boots – only positive comments, so far! – I ask if they know about the zebra being the symbol for rare diseases… and then we’ll usually chat for a few minutes about rare conditions.
And I’ll include some of the symptoms & clinical signs of CRPS/RSD in our conversation. Maybe someday one of their loved ones or acquaintances will start showing signs of CRPS, and the person I spoke with will be able to tell them about this strange condition.
Individual connections like this are often things that people remember. So they can really make a difference in spreading knowledge – raising awareness – of rare diseases ,-)
Thanks for reading!