As always, a huge thank you and welcome to our new members. There are so many things we have to post, stories to tell and progress to share with this foundation, but it always seems like there are never enough minutes in a day to get all of that information out to you. One thing that I can say is that WE (the Jen Schwartz RSd Foundation) are making leaps and bounds in the progression of awareness and advocacy, especially in the DC metro area. I hope to be able to update you on that soon.
On the home front I ask that you please keep Jen in your prayers as she is not doing well and needs them , as do all those suffering. One thing with RSD/CRPS that is hard for those not taking care of loved ones with it , or friends or family that have it, is to try to understand exactly what it is. When you tell someone that person "x" has cancer , it's awful but they have a general understanding of what cancer is. However when you tell someone that your loved one or friend has RSD, they have no clue what you are talking about. We had no clue either the night that Jen's doctor came out to us, approximately 6 years ago, around 11pm, after nearly a two week hospital stay and numerous, prior doctors and tests, and were given the news that "Your daughter has something called RSD." We had never heard of it, known of it, or known of anyone to have had it.
But, after watching our daughter deal with it for almost seven years now, it truly lives up to its name as the "invisible disease" despite being a syndrome. Those fortunate to receive ketamine treatments do have the blessing to have a break from the pain, the ability to look normal from the reduction of swelling or clubbing and have periods of remission, but when a relapse comes, some severe patients can look very different and that is when you can truly see the horror and pain of this most painful ailment.
That is why we started this foundation. To inform those who don't know. To support those who also suffer, and to strive to make a difference in educating, advocating, and petitioning for resources to treat those that suffer.
We , as Americans, have had a pain bill sitting on Congress' desk for a number of years , that doesn't cover the funding for research (medical or pharmaceutical) for worst pain syndrome discovered by doctors and researchers that dates back to the Civil War... And it's called RSD!
That is why it is so important that we have your support, and keep gaining others. While there may be days that go by where the site is quiet it is because Alan and I are taking care of Jen, but this foundation is not a foundation without your support.
So, please know we appreciate each and every one of you and we are making progress.
Please find attached to this note a link to a new article from a leading doctor and researcher Dr. Robert Schwartzman out of Drexel University in Philadelphia. At first glance, it looks like a case study, but it does give you a broader understanding of RSD/CRPS and its complications.
Lastly, I'm going to start another recruitment goal for the month of May in honor of Mother's Day. For all the mom's who suffer from CRPS, and for all the caretakers.
We thank all of you! Please keep recruiting, two seconds of your time can change a lot of lives.
Have a good weekend!
Joyce & Alan
CLICK LINK BELOW!!!!
Dr. Robert Schwartzmann CRPS Article (http://www.rsds.org/pdfsall/Systemic-Complications-of-CRPS.pdf)