International RSD Foundation
"Dedicated To Helping RSD/CRPS Patients Worldwide"
Links
This section of our website is dedicated to RSD related links, RSD support group information, RSD events, RSD book information and many other helpful resources.
RSD Related Links
Dr. Hooshmand’s website: www.rsdrx.com
Dr. Hooshmand’s website is filled with the most informative information regarding RSD/CRPS. On this website you will find an abstract of the review article of 824 CRPS/RSD Patients that was published in Pain Digest (1999) 9:1-24. You will also find abstracts and full text article regarding Thermography and many other topics. Also, you will find 146 of the ever -popular RSD Puzzles© written by Dr. Hooshmand.
Here are some of the topics that you will find in the RSD Puzzle© section of this most helpful website:
What is RSD/CRPS, Spread of CRPS, RSD in Children, Dangerous Treatments, and Four F's Diet.
"Shannon's Hope for House Calls and Home Medical Care"
I initiated my hopes of advocacy via "Shannon's Hope for House Calls and Home Medical Care" on Facebook on behalf of Statesboro, Georgia and Bulloch County in December 2019. This was initiated after a terrifying struggle of nearly 24-months to have medical care after I was subsequently discharged from my long time Primary Care Provider's office of 38+ years (since age 10) due to my physical limitations. I suffer from multiple diagnoses, the most disabling is Reflex Sympathetic Dystrophy (RSD). I have been non ambulatory with very limited use of my arms and hands since 2006. I became bedbound requiring assistance for all ADL in 2016.
My health declined over the years and I found myself too fragile to travel due to the severity of the RSD and additional diagnoses. It was then abundantly clear that in order to have the medical care I needed, not only for my health but for my Disability requirements i.e. Social Security Disability etc., I would need a physician House Call. Aside from needed medical care, most state disability benefit programs require face to face visits with physicians. This began a long and arduous search spanning two years. This included correspondence with every local physician, Legal Aid, CCSP, Elder Care, Action Pact, GSU Nursing and Sociology Professors (our local University) in addition to personal friends. The search for answers incorporated people working in tandem across many state lines. It was at this time that I realized the exorbitant need in our area for physician House Calls.
Countless others, for whom travel is of detriment physically and financially, are in need of House Calls. House Calls until recent times were common place as the medical community understood that the very ill and fragile should not travel. It is a CONTRADICTION for medical care to be more readily available to the well than the ill. This is ostracization and discrimination against the disabled/chronically ill.
In my years of research, I have discovered countless benefits, as documented by numerous sources, for House Call care for both the patient and the physician. Below is an outline:
Physician in home care allows the patient to remain comfortable while the physician can better access the patient and their environment for a better understanding of the personal needs of the patient.
- Pivotal germ control during the very hazardous cold and flu seasons.
- Limits exposure of fragile patients to contagious individuals in an office setting.
- It increases the quality and care the patient receives while in the comfort of their accessible home.
- The physician/patient relationship is stronger.
- There is a significant reduction in Emergency Department visits due to routine care being maintained comfortably and efficiently for patients who would otherwise go without care and resort to the ED when health declines.
- Significant savings to insurance companies, hospitals and the patient as in-patient care costs are reduced. (Many are hospitalized due to health issue exacerbations which could have been managed by routine care.)
- The patient is no longer required to go to a facility in most cases and can remain with their family for greater longevity and quality of life.
- Physicians are allowed greater reimbursement vs. in office appointments reducing the need to limit their Medicare /Medicaid patient base.
Specific ICD codes for insurance billing serve as an incentive to encourage a resurgence of House Call home medical care. Medicare, in particular, is participating as they see the urgent need for both the patient and their bottom line. Medicare is encouraging this movement! Physicians are reimbursed at much greater amounts versus an in-office appointment. Many physicians choose to make a few House Calls periodically to bolster their practice's income. A concierge out of pocket fee can still be considered customary and allowed.
I truly believe that with greater awareness and understanding of this pressing need, local physicians will step forward. I have procured a mobile phlebotomist to serve my area and my goal is to procure a local physician with a heart for the patients. I was most fortunate to meet, via extensive networking, a House Call physician who is sympathetic to my need. He is not local, however very graciously agreed to reserve six hours every three months to perform a House Call for me. This trip entails five hours of travel and a one-hour appointment, accompanied by his Medical Assistant. The concierge fee is expensive for my budget, yet very reasonable considering everything involved. My friends have been very supportive via GoFundMe to help offset the concierge fee. Most mobile physicians now have the ability and technology for imaging to be brought to the home if needed, as well. My story was recently featured in an article in the Statesboro Herald.
I am endeavoring to use my years of struggles and pain for a positive impact on my community. My advocacy "Shannon's Hope for House Calls and Home Medical Care" was born out of need. My goal is to bring awareness to this integral need. A community's character and integrity are shown in the care of its most vulnerable.
My hope is for all homebound and bedbound persons, for whom travel is of detriment, to have availability to necessary medical care in the comfort and safety of their homes. Our battle against RSD is quite daunting. We should not have to spend precious energy fighting for medical care.
I thank you for your time and willingness to learn of my personal needs, and those of many local and rural communities, leading to my advocacy. Together, we can revive the true heart of medical care!
I can be reached via my public advocacy group on Facebook "Shannon's Hope for House Calls and Home Medical Care." I am most open to any and all ideas or information to bring this forth into reality. Due to my physical limitations all correspondence must be in written form.
Sincerely yours,
Shannon E. Killebrew
For more information please contact:
Shannon's Hope for House Calls and Home Medical Care
P.O. Box 43
Statesboro, GA 30459
Newspaper article about Shannon:
https://www.statesboroherald.com/local/local-homebound-woman-fights-better-home-health-services/
Fighting4us is a small family run non-profit organization founded in 2005. Fighting4US is dedicated to aiding those who suffer from Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome through financial awards and scholarships.
Please visit their website at http://fighting4us.com/
RSD Dental Referral’s
Here is a list of Dentists who treat and understand RSD/CRPS and TMJ/TMD.
Mark A. Piper, D.M.D., M.D.
111 Second Avenue NE
St. Petersburg, FL 33701
Phone: (727) 823-3220
Pamela Steed, D.M.D.
St. Vincent’s Professional Building
8402 Harcourt Road, Suite #724
Indianapolis, IN 46260
Phone: (317) 338-6464
Published Articles
Steed PA: The utilization of contact liquid crystal thermography in the evaluation of temporomandibular dysfunction. Cranio, 9: 120-128 1991.
Steed PA: The longevity of temporomandibular disorder improvements after active treatment modalities . Cranio, 22(2): 110-4 2004ￔ
M. Jeffery Morton, D.M.D.
520 Strokes Road Rt. 541
Medford, NJ 08055
Phone: (609) 953-0050
Published Articles
*Please note: The International Reflex Sympathetic Dystrophy Foundation is not affiliated with any of the above-mentioned Dental Professionals listed on this page. This information is simply published as a general information source only.
RSD Events
This section of our website is where will post any up-coming RSD events that will be taking place around the RSD community.
Please check back soon for more updates.
* Please note: The International Reflex Sympathetic Dystrophy Foundation is not affiliated with any of the above-mentioned events listed on this page. This information is simply published as a general information source only.
RSD-CRPS Support Groups in the United States
Illinois
Support Group Contact Information:
Edwina Schaeffer, President
Phone: 630-665-0717
e-mail: edwinaschaeffer@sbcglobal.net
Kansas
Support Group Contact Information:
Lisa Coan
Phone: 913-685-2626
e-mail: lisakcoan@yahoo.com
Massachusetts (Boston Area)
Chronic pain support group for all who suffer from chronic pain including RSD-CRPS.
www.ChronicPainGroupArlington.org
Please email for further information: groupleader@chronicpainsupportboston.org or call: 781-652-0146 and leave a message.
Minnesota
Support Group Contact Information:
Bonnie Scherer
Phone: 952-447-4930 or
952-457-7586
e-mail: RSDSMN@aol.com
Ohio
Support Group Contact Information:
Susan Diamond
Phone: 614-805-4239
e-mail: Sediamond57@yahoo.com
Cindy Lowe
Phone: 937-387-6687
Phone: 937-387-6687
e-mail: cloweS339@aol.com
Rhode Island
Support Group Contact Information:
Heather Mello, Group Coordinator
Phone: 401-996-1612
e-mail: hmello@cox.net
RSD-CRPS Support Groups in other Countries
Israel
Support Group Contact Information:
Dorit Drori
e-mail:ddtravel@ddtravel-acc.com
Netherlands
Support Group Contact Information:
Dutch Association of Posttraumatische Dystrofie Patients
If you would like to have your support group information and meeting dates listed on our website.
Please e-mail me at: Utopia33@Prodigy.net
* Please note: The International Reflex Sympathetic Dystrophy Foundation is not affiliated with any of the above-mentioned support groups listed on this page. This information is simply published as a general information source only.
Thermography Links
American Academy of Thermology
THERMOLOGY INTERNATIONAL
(formerly EUROPEAN JOURNAL OF THERMOLOGY)
https://www.eurothermology.org/thermologyint.html
Next Step Bionics & Prosthetics
As, a recent amputee I had the great pleasure and honor to meet Peter Couture, CP, President and Clinical Director of Next Step Bionics & Prosthetics located in Warwick, RI.
I met Peter prior to my amputation for a consult. Peter took the time to discuss my options that I may have after having an amputation. Since my case is not your typical amputation case due the fact that I suffer from Reflex Sympathetic Dystrophy (RSD). My amputation would be a little bit different for many reasons:
1. How would my RSD react to the amputation? Would the amputation cause my RSD pain to get worse?
2. How would my stump react to wearing the prosthetic?
3. Would I be able to stand or even take my first steps in more than 20 years?
Peter, took the time to listen to all my concerns and fears about having an amputation. Peter and his staff have made me feel so comfortable and confident that everything that I am doing will work out well for me.
Well, I must tell you that it has over 10 years since my surgeries (August 25 and 27, 2008). I had to have a two-stage amputation due to the infection in my left foot. On November 12, 2008, I was able to stand without the use of my crutches and I took my first steps in more than 20 years.
I, now recall the first meeting that I had with Peter. He told me that he would have me walking the first time I put on my new leg. Well, I must tell you that he was 100% right.
It has been more than 20 years since I last walked on two feet. With the help of Peter and his staff, I am able to take my Next Step in life.
I can't thank Peter and his staff enough for all their help and support. You all have made my life so much better.
All my Best!
Eric M. Phillips
Please visit Next Step's website at:
http://www.nextstepbionicsandprosthetics.com/
Medical Journal Links
BRITISH MEDICAL JOURNAL
FREE MEDICAL JOURNALS.COM
http://www.freemedicaljournals.com/
NEW ENGLAND JOURNAL OF MEDICINE
Medication Links
Needy Meds website is designed to provide information about patient assistance programs which provide no cost prescription medications to eligible participants.
Medical Equipment Links
The American Medical Resources Foundation takes donations of used, functioning or repairable medical equipment and medical supplies are needed for shipments to charitable hospitals and clinics in developing countries. All equipment is inspected, tested and repaired by professional biomedical personnel before shipment. You can help us with equipment and supplies from your hospital or company. If you are considering selling or otherwise disposing of your medical equipment that you are replacing or not using, please consider donation.
Please remember that AMRF is a 501(c)(3) corporation. Your donation of equipment and supplies may be tax deductible. AMRF can arrange for pick up and transportation of donated materials that have been accepted.
Other helpful Links
American Pain Foundation: http://www.painfoundation.org/
Clinical Trials: http://clinicaltrials.gov/
Disabilitysecrets.com provides tips, advice, explanations and answers to your Social Security Disability and RSD questions.
http://www.disabilitysecrets.com/social-security-disability-rsd.html
Unrelated Links
Todd Rundgren
In this section of our website is a place where I would like to share with you the musical side of my life. The music of Todd Rundgren had gotten me through the past 38 year of many hard times in my life since I developed RSD.
Todd's music has helped me cope with living with my RSD and the many surgeries that I had to have over the past 38 years including surgery to have my left leg amputated in August of 2008.
I can't thank Todd enough for all the great music that he has created over the years.
I must say that Todd is a wizard a true star!
Please click on the link below to view information and pictures regarding Todd Rundgren in PDF-format.
The Artist Corner
This section of our link page is dedicated to RSD patients who are Artist.
Please click on the link below to view some wonderful art work created by a very talented Artist by the name of Catherine Lee Neifing. http://www.catherinelee.com/index.html
Freddie’s Fabulous Hawaiian Teriyaki Sauce
If you are like me and want to cook and eat healthy, please try this wonderful Hawaiian Teriyaki Sauce. This is the best Hawaiian Teriyaki Sauce I have ever tried in my life. It is only 20 calories per Tbsp and it is very low in sodium, only 43 mg. I use it every night when I stir-fry. Once you try it you will be hooked!
Happy Cooking!
Eric
Please visit Freddie's website at: http://www.hawaiiansauce.com/index.html
contact us
Eric M. Phillips International RSD Foundation
phone or text: (508)479-9888
Last Update: August 7, 2024
Celebrating our 28th Year Online Helping RSD/CRPS Patients
(1996-2024)
