International RSD Foundation

"Dedicated To Helping RSD/CRPS Patients Worldwide"

New RSD Projects
 

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This section of our website we will post information regarding any new RSD/CRPS projects that are being done in the RSD/CRPS community. 

 

New CRPS Book Project (As of 10-22-2020)

Dear Fellow CRPS’ers,

Hello, I would like to inform you that Dr. Alaa Abd-Elsayed and I are writing a third book regarding CRPS. This book will focus on the topic of CRPS and Amputation.

We would like to hear from anyone who had an amputation while suffering from CRPS and would be interested in having their personal CRPS story published in our new book.

By having your CRPS story published it would help other CRPS patients cope with their pain, help educate the medical community, help educate patients, family members, and friends.

The following criteria is needed for your story:

  • How did you develop your CRPS (trauma or surgery)?
  • How long have you had CRPS?
  • What type of amputation did you have?
  • Arm and Hand:
  • Single digit or multiple digit amputation.
  • Partial hand amputation.
  • Wrist disarticulation.
  • Trans-humeral amputation, commonly referred to as above-elbow amputation.
  • Trans-radial amputation, commonly referred to as below-elbow or forearm amputation.
  • Elbow disarticulation.
  • Forequarter amputation.
  • Shoulder disarticulation.
  • Foot and Leg
  • Foot Amputation.
  • Amputation of the digits (single or multiple digits).
  • Below the Knee Amputations (Transtibial Amputations, BK): This amputation includes all of the levels from the knee to the ankle.
  • Knee Disarticulation Amputations: (This amputation occurs at the level of the knee joint.)
  • Transfemoral Amputations (above knee amputations, AKA): This amputation includes all levels of thigh amputations from the hip to the knee joint.
  • Hip Disarticulation Amputations: This level of amputation is at the hip joint with the entire thigh portion being removed.
  • What treatments have helped or not helped? (Please write about your treatments, therapies, opioids, procedures (nerve blocks, SCS, infusion pump, sympathectomy, psychological treatment, dates, and duration of treatments)
  • How has CRPS changed your life? (For example, divorce, addiction, losing your job, becoming homeless, suicidal, etc.…)
  • How being an amputee has changed your life?
  • If you know of a CRPS patient who had committed suicide or died from complications due to CRPS, we would like to get in touch with their family.
  • You can write as many pages of your story as you would like and please add a title for your story.
  • Please feel free to add a few photos of your affected extremities (before amputation).
  • For your story you have an option to use your first and last name, just your initials, or you can be anonymous. (please choose and let me know which option that you are most comfortable with using for your story)
  • In regards to using a doctor’s name in your story, you need to have their written permission to use their name or you can just use their first and last initials in your story (example: Dr. B or Dr. E.B. or you can just say my Neurologist, Orthopaedic, or my Surgeon, etc…).
  • In regards to using a doctor’s website, it can only be used if you have written permission from the doctor to use his/her website address. If you do not have written permission, we will have to remove it from your story.
  • If you have your own website address for an RSD-CRPS group, it can be used to help promote awareness for RSD-CRPS.
  • Please submit all stories in either a Microsoft word document or pdf file.
  • The deadline date to submit all stories is November 30, 2020.
  • If you are interested in having your story published or have questions regarding this book project, please contact Eric Phillips by e-mail at utopia33@prodigy.net (please put CRPS Book in the subject line) or by phone at 774-501-2808.

We are looking forward to hearing from you.

Best regards,

Dr. Alaa Abd-Elsayed and Eric M. Phillips