Category: accessibility

Rare Disease Day 2020

ZaraLeave a comment

Hi everyone!

Once again we come to the last day of February- Rare Disease Day. This year it falls on February 29th, which is especially fitting.

Rare diseases/ disorders affect over 300 million people worldwide. In Canada, 1 in 12 is affected by a rare disorder. Each of these disorders is rare, but as a group they certainly aren’t. Three million Canadians are affected, and of course many more when you think about their loved ones and their support system. The Canadian Organization for Rare Disorders is a good place to start if you are trying to learn more about Canadian support and information.

Please check out my post from Rare Disease Day 2018, there is lots of good information on there about the movement, and some examples of rare diseases/ disorders.

I never thought I would be part of this club, and all I want is no new enrollment. Learning is the first step!

❤

Positive and Successful CRPS Stories

Zara4 Comments

Hi, everyone!

With CRPS, we often hear worst-case scenarios, and horror stories. What about stories with a positive resolution? 

I have compiled some stories so you can know success stories do exist, and that they aren’t as rare as the (often negative) internet landscape implies. Here’s the thing…Read More »

Music Festival Accessibility Please!

ZaraLeave a comment

Hey everyone!

I attended music festivals for over 20 years before developing CRPS. Yes, for most of my life I have been dancing to incredible music spanning dozens of genres.

The last time I attended an event, I was severely limited by my pain. This really made me think about whether festivals are possible for someone with issues like mine. If so, how many festivals would be possible? The kind of festivals I used to go to, anyway- outdoor multi-day music festivals…

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Rare Disease Day

ZaraLeave a comment

Hi everyone!

Today is an international awareness day for rare disorders. I live with Complex Regional Pain Syndrome, one of over 7000 conditions covered under the umbrella of “rare disorders”.

So Happy Rare Disease Day, and I hope you learn a new fact about someone’s rare affliction today!

Please feel free to visit my post from last year to learn some more general information about rare disorders such as stats, support resources, and more. I’ve also included a couple example disorders to give you an idea the range of effects these conditions can have. So please check out my post from last year, I swear it’s not outdated which is a fun surprise for me!

 

“What is Rare Disease Day?”

 

P.S. Rare Disease Day is February 28th! I’m not sure why this was marked March 1st, I’m sorry for the confusion!

A Little Ocean Dip

ZaraLeave a comment

Hey there, everyone!

I recently had the privilege of visiting the Pacific Ocean via Newport Beach. That was really cool. I’ve been to the ocean a decent number of times before, but this time was different.

I was able to handle the wind. I was able to walk to the water, through the soft sand and then the oobleck sand. I was able to approach the water, and stick my regular foot in it.

It was absolutely lovely. It was a testament to all the progress I’ve made, and of progress to come. It has to be.

 

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The Ocean ❤ 

 

“You’re Too Young For This”

ZaraLeave a comment

Hi everyone.

A common experience for people with disabilities in my age group (and younger) is to hear people say, “you’re too young for this”. Sometimes it’s in response to a casual conversation. Sometimes it’s just because they see you walking with a cane. Sometimes it’s a family member or loved one who can’t believe the symptoms you describe. Sometimes it’s a doctor that you are begging to take your health concerns seriously, but they’ve already given up.

“You’re too young for this.”

Am I, though?…

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