Multidisciplinary Treatment…Three Weeks in Utah

  By Aubrey Haley   In 2013, after living with full body CRPS for almost four years, I was afforded the opportunity to go to a treatment facility. My husband and I dug deep into the multidisciplinary treatment world, searching online and making phone calls for days. I knew I didn’t want to be checked into a rehabilitation hospital. Likewise, I didn’t want to be treated like a drug addict or a psych patient; I needed a facility that understood the intricacies of chronic pain. The Bridge Health Recovery Center kept popping up on my Google searches, like a sign from the universe. I was terrified to leave my family for almost a month, but I was desperate to treat…continue reading

Please join RSDSA for the Achilles International Walk for Hope and Possibilities on June 28, 2015 in NYC’s Central Park

I want to introduce you to Diane Simonson, a first-time walker in this year’s walk. I am a former ballet dancer. In 2006, I began to have problems with my legs. I was tested for MS, Lou Gerhig's Disease, and everything else under the sun. As many of us have experienced - doctors told me I was 'faking' it, and it was 'all in my head.' (Yes, I can magically make my legs swell to twice their size and make skin color changes! I ‘m an amazingly good faker!) Finally, I was diagnosed with CRPS/RSD in 2009 .I was also very, very fortunate to find doctors (a neurologist, two orthopedics, a pain management doctor) at HSS who still work together…continue reading

The Cynthia Penaskovic Memorial Fund

  Pain is a more terrible lord of mankind than even death himself. - Albert Schweitzer. Too often, life changes on a dime as my pastor frequently tells our congregation. Just ask any person suffering with CRPS when they developed CRPS/RSD and they can immediately relate the date and time. So it was with Cynthia Penaskovic, a vibrant naval pediatric flight nurse who developed CRPS/RSDS 25-years ago after a car accident in southern California. Her doctors at Scripps Torrey Pines in San Diego called it “one of the worse cases of widespread RSDS they had even seen.” Joan Penaskovic, Cynthia’s sister spoke of her subsequent “solitary life spent creating exquisite beaded art which she often donated, until she could no…continue reading

New U.S. Clinical Trial of Neridronate

  In the last fifteen years, only two randomized, placebo-controlled trials for CRPS have been conducted in the United States. Sadly, both were unsuccessful. Our optimism is rising, however, with the U.S. Food and Drug Administration’s declaration in 2014 that Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD), is officially a rare disease. The designation is a strong catalyst for new drug development. Developers qualify for clinical trial tax incentives, may sell the drug without competition for seven years, and may enroll fewer patients in a trial (as recruiting is more difficult in small populations). Four pharmaceutical companies are now considering clinical trials for CRPS in the United States. The first out of the gates is…continue reading

Camp for Courageous Kids!

Do you remember sitting around the campfire and signing camp songs, roasting marshmallows and giggling with your new friends? It's your first day of summer camp and you are so excited to be there, to join in all the activities: archery, bowling, arts & crafts, horseback riding, etc. Fast forward 25 years to being a mom and/or dad whose child who lives in chronic pain - there are no summer camps for your child because he/she is "too complex." But now there is a summer camp for children living in chronic pain: The Center for Courageous Kids in Scottsville, Kentucky. RSDSA, together with the US Pain Foundation and The Coalition Against Pediatric Pain (TCAPP), is sponsoring a camp July 14-17,…continue reading

RSDSA launches new, user-friendly website and blog to help the CRPS Community

Welcome to RSDSA’s new website and blog. We’ve updated our presence on the web in order to better serve the CRPS/RSD community. The new website is very user friendly and easy to navigate. The idea is to help you quickly find the information, tools, and strategies you need to understand the diagnosis of and treatments for CRPS -- and how to live well despite having this condition. For those visitors who don’t know about us or about CRPS/RSD, RSDSA is an international not-for-profit organization based in Milford, Conn. Our mission for the last 30+ years is to provide support, education, and hope to all those affected by CRPS/RSD while we drive the search for better treatment options and a cure.…continue reading