Esquire Theme by Matthew Buchanan
Social icons by Tim van Damme

22

Jan

I know you all lead very busy lives, but PLEASE take a second to watch this video so that we can raise awareness for Complex Regional Pain Syndrome (CRPS/RSD) and help this poor 11-year-old go back to living a busy life too.

No one her age should have to suffer the enormous amount of pain caused by this disease. So, if this video touches you in any way… help other young CRPS sufferers tomorrow (Friday, 24th) by wearing “crazy socks” (yup, it’s a thing!) It doesn’t matter how long you wear them for - just take a picture, post it to the following Facebook page, and enjoy the feeling of having done your good deed for the day!

https://www.facebook.com/CrazySockDay

11

Nov

Back in Philly for more CRPS/RSD treatment. Wish me luck! xx
(at Hahnemann University Hospital)

Back in Philly for more CRPS/RSD treatment. Wish me luck! xx

(at Hahnemann University Hospital)

01

Nov

Any & all girls in #hospital gowns this Halloween , y’all are princesses. Costume or not.

Any & all girls in #hospital gowns this Halloween , y’all are princesses. Costume or not.

30

Mar

Exactly 3 years to the day since the accident that triggered my CRPS/RSD. Many more than 3 people to thank for empowering me on this journey through love, hope, positivity, and faith. Couldn’t have gotten here without y’all. xxx

08

Mar

You're Invited!!! - RSDSA's biggest & best CRPS/RSD study ever...

If you suffer from Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD) and want your answer to Monday’s inevitable line of, ”What did you do this weekend?” questioning to be:

"Oh, me?… I only became a part of the biggest and best CRPS/RSD study ever sanctioned by RSDSA in the whole history of ever."

(And you should want that answer! You should want it very much!)

Then follow my lead, you guys!

Click on the top headline to take part in an Internet-based study through the renowned Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), whereby sharing your experience with CRPS/RSD will finally allow some sorely needed, much lagging research to be kicked into high gear. 

Anyone with a diagnosis of either CRPS I or CRPS II is welcome to join, and participants will not need to submit any medical records in order to register for the study. Participation is totally voluntary and you’re more than welcome to withdraw at anytime. Simple, I know!!! It’s absolutely brilliant!

It all sounds a bit too good to be true, doesn’t it? Is there a catch?! Are they going to lobotomize you once you’ve signed up? NOPE! I repeat, NO. The study remains easy and totally pain-free (hmm, well, I suppose not actually literally pain-free due to the fact that you suffer from Chronic Pain…) 

So what’s your role? As a long-term study participant you will be asked each year to repeat a series of questions on your health, your healthcare, any treatments undertaken, and how the CRPS/RSD has affected your health and wellbeing since the last time. Ta-dah! Easy as pie!

Need more details? Go ahead and click here to read all about it!

To register, click here or on the headline above. 

Can’t wait to see how many of you are excited about this study as well? Let me know! And let’s tweet it on! I’m @theproject3x5

Happy Surveying! 

How are you feeling?!? Have a wonderful Friday! - Danielle xx

28

Feb

It’s Rare Disease Day today! 

Want to learn more about it? The short video above is a brilliant start!

Of course, there’s also loads of info up on the official website (www.rarediseaseday.org). There, among other things, you’ll find news, fundraisers - like the oh-so-simple! one still happening right here on TheProject3x5 - and last but not least all sorts of activities that will allow you to interact on a global scale with others in a similar situation. 

The slogan this year for the 6th annual Rare Disease Day is “Rare Disorders without Borders” emphasizing the need for international cooperation. Well, it just so happens that one of the things I’m most proud of about TheProject3x5 is how far-reaching and global my readership is. So everyone get involved! Go to the official website and go beyond your border for your rare disorder! Let’s demonstrate global solidarity and show them what we’re about. 

You guys are the best! Thank you so much for your strength and the inspiration that you provide for me every single day. Lots and lots of love. - Danielle xx

14

Jan

The countdown is officially on! Rare Disease Day 2013 is just around the corner! Ready..?

My calendar’s marked! The clock is ticking! That can only mean one thing… 2013’s Rare Disease Day is just around the corner and the countdown is officially on!

It’s a totally bizarre thing to be excited about a day for ‘rare diseases’. I accept that. In fact, I’d probably have looked at you as though you were a total loon if you’d spoken to me excitedly about this, before I actually ‘contracted’ (there’s never a good word to use there) one myself…

Like many things in my life now, however, my little run in with the chronic pain and illness that is Complex Regional Pain Syndrome/ Reflex Sympathetic Dystrophy (CRPS/RSD), in all it’s might and glory, has shifted my perspective. Not only am I excited about the fact that there’s a day for the acknowledgment and recognition of rare diseases, but I think YOU should be too. Here’s why…

By definition, any disease affecting fewer than 200,000 people is considered to be rare. Now imagine the strangest, most heartbreaking conditions you’ve ever heard of - whether that be via this blog, National Geographic, the Discovery Channel, or perhaps even ‘House’. I’m guessing they were few of a kind, weren’t they? Things that you’d never want or be able to dream up in your wildest nightmares. Perhaps you’ll even remember reading here about the fact that CRPS/RSD was declared by Fox News to be one of their Top 5 “Crazy Diseases”.

In the US alone, there are 7,000 of these ‘rare diseases’, meaning that approximately 30 million Americans are currently affected. Let’s break that down, shall we?

Almost 1 in every 10 Americans currently suffers from a rare disease.

So take a look around! Think about those you know. Consider others. Consider yourself! Spread the awareness. These are the most heartbreaking of illnesses! With your help they can get the funding and assistance that they deserve.

So, just tell a friend. Spread the word. Reblog this! Tweet about it. Get the message out there, and before we know it…maybe that 1 in every 10 will be whittled away before we know it…

12

Jan

Today I have a 6/6 record (that would be perfect…) of: ‘Trying to get out of bed but failing miserably’. Who would like my autograph? xx

image

07

Jan

"Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending."/ Carl Bard

03

Nov

Nervember to Remember. 
SO much love to all of you! xxxx

Nervember to Remember. 

SO much love to all of you! xxxx