RSDSA: The People and Programs Behind the Website

RSDSA: The People and Programs Behind the Website

By Jim Broatch, MSW

Executive Vice President, Director, RSDSA

I would like to introduce National Pain Report readers to the many programs and activities of the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA).  Too often, people are referred to our website (www.rsds.org) or find us via a link during an exhaustive internet search. They see that our site houses a tremendous amount of helpful information but may lose sight of the fact that RSDSA is a vibrant organization which has been serving the CRPS community since 1984.  Two moms with children with CRPS started our organization.

Our mission is to provide support, education, and hope to everyone affected by Complex Regional Pain Syndrome (CRPS), formerly known as Reflex Sympathetic Dystrophy (RSD) while we drive research to develop better treatment and a cure.

In terms of the first part of our mission, RSDSA has established two funds to support those with CRPS.

  • The Maria Lane Fund is designed to help individuals navigate the public/private insurance landscape and to promote greater professional awareness of CRPS. This fund also helps to sponsor the development of education programs for healthcare professionals in an effort to increase awareness of CRPS.
  • Our second fund is the Patient Assistance Fund in honor of Brad Jenkins. It provides emergency financial grants to individuals in distress. Since 2015, the fund has provided over forty thousand dollars in emergency financial aid. (https://rsds.org/jenkins-patient-assistance-fund/). Sadly, at times, our fund is the only available source which keeps families from living on the street.
  • For the past three years, RSDSA has co-sponsored a free week-long camp for children in pain. One child remarked that the camp experience had literally saved her life. She had already tried suicide.
  • This summer, RSDSA also developed a young adult’s weekend retreat to help those aged 18-29 transition into higher education, the workforce, and or living on their own. Read about Melissa’s experience, https://rsds.org/crps-retreat-gatherings-positive-impact/
  • Later this year, we will publish the third edition of an invaluable financial and social services directory called In Pain and Agonizing over the Bills.
  • Our staff and board of directors are always available to help individuals navigate this scary, perplexing diagnosis and begin their recovery journey. People can call us via our toll-free line 1-877-662-7737 or send an email, info@rsds.org. Whether you have had CRPS for decades or just months, we’re here to help and listen. One young adult just diagnosed, thanked us and wrote, “I have been completely overwhelmed and frustrated, but you gave me some hope and inspiration to research and fight to get better.”

Spreading awareness in the medical, legal and insurance fields, as well as to the community at large, is an integral part of our mission.  Each year, RSDSA hosts regional educational conferences for people with CRPS and their care givers. Each conference is filmed and archived on RSDSA’s YouTube channel, (https://www.youtube.com/user/RSDSAofAmerica) and have also complied hundreds of peer-reviewed journal articles in our web library, https://rsds.org/existing-papers/

The third leg of our mission is research. Since 1992, RSDSA has funded more $3 million dollars in pilot studies and pain fellowships.  Three years ago, we established the International Research Consortium with the goal of fostering increased collaboration amongst CRPS researchers worldwide. Their mandate is to promote research directed at relieving the pain and disability of CRPS, facilitating its prevention, and ultimately, finding a cure.  Read about RSDSA’s current-funded research.

RSDSA exists to serve your needs, no matter how you are affected by CRPS. We are here to help and are guided by the thoughts of Henri J.M. Nouwen, “Often we are not able to cure, but we are always able to care.” RSDSA is so much more than a website. It truly is a community of caring. We invite you to look beyond our website to see the people and programs which give it life.

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Authored by: Jim Broatch

There are 6 comments for this article
  1. Dave at 10:58 am

    I would be remiss in not thanking Mr Broatch for his courage to use the word cure twice in reference to RSD. Cure is a dirty word in DHHS when it comes to chronic pain as it is clear with the National Pain strategy and the Federal Pain Research Strategy that they want more funding for research on pain management and have failed to commit the staff that has an interest in curing pain. As Dr Robert Dworkin made clear in a FPRS meeting in June- ” we have not thought about the possibility of curing pain”. Furthermore the FPRS has 4 members who in the 2011 IOM report on pain in America clearly state- ” We do not believe in cures for pain”.
    As Adam Smith wrote the butcher doesnt sell meat because he loves people- likewise researchers on pain dont seem to do it for the love of people in pain, either. If they were to research curing pain- which clearly they are prejudiced about- then they would eventually lose grant monies.
    Medical research including pain research is a never ending game- like the battle of the bulgehttps://www.youtube.com/watch?v=A7IxwOlr2PY.
    DHHS, universities will not save the day for people in pain. It is up to us to require them to try to cure and prevent pain- failing them they will focus on more and more grants develop more and more information without real focus on meeting the needs of people in pain.
    I hope Mr Broatch will call on DHHS to stop fooling around and try to prevent and cure rsd- I have letters to Dr Basbaum and Dr Somerman calling for that. And after they duck dodge deny and dismiss it will make its way to Secretary Price and Congress. Lets work to reform the self serving ways of DHHS.

  2. Kristine Lucius at 7:08 am

    I have CRPS TYPES 1 & 2 in my right knee. Through the years it’s spread to my whole leg. I had the neurostimulator implant which when first was put in, it did give me some relief but through the yrs it’s not as affective. I was on 30mg tabs 6 times a day & with the war against opiods my Doc dropped me way down to 10mg tabs 4 times daily. By some of my family I have been called an addict since at times like most of us which I had permission from my Doc to do that if my pain was bad I could take 2 at once but if I went over my limit for the day to cut it down another & don’t be way under count. I had a revisement on my neurostimulator position & when the doctor did it he hit a nerve in my butt cheek & now that is in sever constant pain & sitting w pressure or even weather, movement vibrations etc all cause extreme pain & I don’t know where to turn anymore for way to handle the pain & increase tolerance which I can’t seem to do through the years since my CRPS has spread all over my left side. Any ways you can direct me for more ways to help would be appreciated. I do focus breathing, therapy/mental, heat, essential oils, icy hot etc, a roller to help roll fresh blood into my tight knotted muscles that occur from the pain, things touching area, weather, vibrations etc. I’m completely lost.

  3. Paula Sorrentino at 7:51 pm

    I live in NJ and have been living with RSD for 17 years. I travel into NYC for Pain Management and have a Great doctor. If anyone wants his information please feel free to contact me.
    I have been on so many different medications and have finally found the right ones. But due to all the controversy I am sure I am not the only one who is watching their Medications getting cut back each month. It is getting harder to live with this pain month to month. I’m working on writing to my Congressman and Senators and telling them that we as Pain Patients need our Medications without them we will be next going to the streets to get our pills
    pjkids89@gmail.com

  4. Nurse beth at 7:27 am

    Bravo jim Broatch and to all involved with RSDSA. What a wealth of information and support to patients and families. In this harsh climate of health care it’s reassuring to know RSDSA has our backs so to speak.

  5. Stephanie Zollner at 6:54 am

    Hi, the reason i am writing is that i live in Rockland County and CRPS for 6 years in my left hand/fingers which my fingers are getting worse affecting my nails and cuticles which feels like they are being pulled and ridged nails and small cuts around the nai area. Due to the anxiety and mental status i have, this summer i ended up in Englewood Hospital where they tried the ketamine nasal spray which the first time put me into hullucinations then after 4 hours i had minimal pain, then they tried a lower dose on and off the the next few weeks when i was transferred to CareOne Valley Hospital in Westwood, NJ. This metod didn’t work for me and i am not a candidate for infusions due to the intense stress and anxiety i’m undergoing.
    I went to Pain Management doctors and have been on low dose Oxycodene 10/325 2x a day sometimes i don’t take that much and now I don’ have a Pain management doctor and found another one who only suggests Spinal Cord and doesn’t believe in Opiods and i need to find a Pain Management doctor since i don’t want to have withdrawal from it. I’ve had enough withdrawal weaning off all other medicines and it makes me feel like I’m going crazy. I am definately not a candidate for a Spinal Cord due to mental and stress conditions and know too many people who had problems and i have severe sweating and chills everyday and don’t want to feel like a robot. I have had reactions to all the meds prescribed and am weaning off of them and don’t want to have any withdrawal with Oxycodone/Percocet since I am having so much trouble dealing with the changing of my CRPS getting worse and have enough anxiety and stress. I have and continue to try Meditation finding life difficult to focus or even be a part of since every day I have almost no sleep and seems my like has become my illness and THAT IS SOMETHING I DON’T WANT. I do see a therapist for years however being Mindful and other suggestions of re-focusing is so difficult for me I’m anxious everyday I wake up cause I don’t know how to deal with my days.

    The other alternative is Medical Marijuana and CBD. I got my MM License and I have tried the tried Medical Marijuana once with 2:2 ratio which was too high for me so was asked to try a different strain with a very High CBD and low THC. I am also trying the CBD which takes time to build up in your system and due to its popularity it is very expensive and with the extent of my high anxiety with sleep deprevation and hand pain I feel I’m losing ground and my doctors are at a loss with all my health issues that developed; severe IBS with delayed emptying, losing weight 60 lbs not good, anxiety and depression, teeth abcesses which i had extracted and gum disease, and being homebound having Occupational therapy and Physical Therapy since I am not driving and using a walker but feeling isolated cause friends and family just don’t understand and say This is part of your life so accept it. This is very difficult for me.
    The problem with this option of Medical Marijuana is that in New York where i live there is only one dispensary in White Plains, and New York has very very limited variety to choose from. They have the Capsules , the oil and the vape. All three are extremely expensive and I don’t know how anyone can afford this option living in New York.
    Just felt I needed to express my feelings and hope this was ok to write.
    I had met Jim Broatch years ago when I first tried the Calmare Treatments in Connecticut with Dr. Evers Whyte.
    Thanks you for letting me express myself.

  6. Lisa Webb at 5:16 am

    Thank you very much for this info. I’ve been suffering since 2001 and its only getting worse with the new laws on opioids!!

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