RSDSA is asking the CRPS community to support House Resolution 1154 affirming the Importance of the Orphan Drug Act

By James W. Broatch, MSW, RSDSA Executive Vice President, Director and Marin Blake Cartelli, RSDSA Advocacy Committee In 1983, The National Organization of Rare Disorders (NORD), working with Representative Henry Waxman was instrumental in advocating for the passage of the Orphan Drug Act (ODA) which brought new hope to the rare disease community by encouraging the manufacture and distribution of new therapies. 35 years ago, when it was introduced, there were only 34 therapies available to treat rare diseases. Today, there are over 700. Under the ODA drugs, vaccines, and diagnostic agents would qualify for orphan status if they were intended to treat a disease affecting less than 200,000 American citizens. In order to encourage the development of drugs for…
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Thankful

By Shannon Schildt-Leidig Oh my gosh I cannot believe we are coming up to the Holiday season and the end of another year!  This is a time in which I stop and reflect on all that has happened in the past year and to say THANKS to those special people in my life who have stood by me thru thick and thin ~ and believe me there have been some very thin and dark times this year . . . . . This blog is dedicated to two very special people in my life, my parents John and Mary Ann Schildt who have been my support since I was diagnosed with RSD/CRPS 28 years ago.  I honestly do not know…
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25 Years Later

By Keven Mosley-Koehler To My Friends and fellow-survivors, Last week, I was playing a tennis match and my feet somehow got tangled up as I was running down a well-placed ball and the next thing I knew as I lunged for it I went down hard onto my right hip and leg. The first thought I had was whether or not she had been able to successfully return my shot! My second thought was, “ouch, but I need to get up and finish my match!” (I take tennis very seriously). It wasn’t until after the match concluded and I was on my way home that my chest squeezed up as that now-so-familiar question broke into my awareness: “Will this trigger…
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CRPS/RSD & Surgery

By Debbie ONeal The first thing that pops into my mind when I hear “surgery is needed “is pain.  Then it jumps to will it spread?  Then I worry about why I need surgery to begin with. I know a lot of us have horror stories about going to the hospital and having surgery.  My way of thinking in my 14 1/2-year journey with RSD/CRPS is you have to respect it.  If you’re hurt you give yourself time to heal.  You baby your injury.  Our syndrome effects our autoimmune system which effects the way we heal.  When having surgery to me it’s imperative that you keep the RSD/CRPS calm because it’s your best chance at healing as best we can.…
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RSDSA launches a $10,000 matching challenge for CRPS research 

By James W. Broatch, MSW, RSDSA Executive Vice President, Director In August, I blogged about Jen’s Gift, https://rsds.org/jennifers-legacy/  a posthumously published collection of Jennifer Abramson’s optimistic and spirit-filled postings on her Instagram site, Goal2Soul. Despite suffering with Lyme disease, toxic mold syndrome, and CRPS which rendered her housebound, Jen posted beautiful unique photos accompanied by insightful quotes, clever humor, and wisdom which continue to inspire her readers today. In celebration of Jen’s life, Annie Abramson, Jen’s mother has created a fundraising challenge for the CRPS community during November’s CRPS Awareness month. Anne has pledged to match up to $10,000 every dollar which is spent on purchasing Jen’s Gift or donated in Jen’s memory. All of the challenge’s proceeds will be invested…
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November’s CRPS Awareness Month is Fast Approaching

By James W. Broatch, RSDSA’s Executive Vice President, Director I want to reissue my invitation to the RSDSA community to participate in November’s CRPS Awareness Month. “As November’s CRPS Awareness month nears, I would like to offer our community members an opportunity to share their stories, their successes, hopes, and what ifs. We would like to share a story each day of the month on our blog and social media platforms. If you are interested, please email me at info@rsds.org Thank you. Best of health, Jim Broatch #CRPS #RSD #chronicpain #crpshope #rsdsa Please share or Retweet."  So far, I have received many commitments from individuals with CRPS to share their CRPS journey narrative but few submitted stories. Flex those fingers…
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Former State Representative develops little-known syndrome

By Honorable Jennifer R. Lesogor-Coffey Manchester, NH, October 2018 Former New Hampshire State Representative and Civil rights Advocate has been diagnosed with Complex Regional Pain Syndrome (CRPS) Type 2. It is a disease that affects only 200,000 people in the United States according to National Health Statistics and the National RSDSA organization based in Connecticut. I’m a strong woman who is an accomplished award-winning published author, strong advocate for the rights of women to care for themselves, and a two-time cancer survivor. I hit my mile marker of five years breast cancer free this past September. I’m a strong advocate of promoting greater CRPS awareness to ensure early detection especially after being diagnosed with CRPS Type 2, the rarest form…
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Swimming Against the Current

by: Jenny Picciotto November is National Complex Regional Pain Syndrome Awareness Month, and November 17, 2018 holds special significance for Konnie Parke. On the 7th anniversary of the surgery that led to her CRPS, she intends to celebrate in an unusual way - she will televise a swim-a-thon in her garage to raise awareness about this rare disease. Her goal is to swim for seven hours over a 24-hour period – in 15 to 30-minute increments - while live streaming the event. “Doing a fundraiser feels intimidating,” she says, “but it’s a passionate project of the heart. I can’t walk, I can’t run, I can’t Zumba, but I can swim. It’s my way of giving back.” In fact, swimming has become…
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Sheryl’s HOPE

By Sheryl Rehs This is a story about adversity and fear. It’s a story about emotional and physical pain, but ultimately, it’s a story about acceptance and hope. Hi! My name is Sheryl and I’m 56 years old. I’ve lived in Tucson Arizona since 2005. I moved to Tucson leaving my entire family in New York due to medical reasons. I was married for 23 years, have two incredible children, ran my own company, and was truly overwhelmed with stress. In 2005, I was diagnosed with Multiple Sclerosis (MS). For 3 years I had horrific brain fog and fatigue. Divorced and remarried, I was a triathlete at that time and was in the best shape of my life!  For treatment,…
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Another Rider for RSDSA

By James W. Broatch, RSDSA Executive Vice President, Director In October, a friend of RSDSA, Tatum Bunnett will be embarking on a bike ride across our country to raise CRPS awareness and funds for RSDSA. You can donate on her FirstGiving page to help her. This is what Tatum plans: "I am a recent high school graduate who was diagnosed with CRPS when I was in the 5th grade. I was born with birth defects in both feet which caused CRPS, I battled CRPS for 3 years. After months and months of therapy, I was able to begin living a more normal lifestyle. While I am incredibly lucky to be able to control my CRPS and live normally again, it…
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