I want to thank The TIMES NEWS for making people more aware of RSD. Our daughter died in 2003 and she suffered for 12 years from this disease with excruciating pain. She saw many doctors. It started in her ankle when she twisted her legs to stop a med cart from hitting her.
A patient at Gracedale. She had surgery on both legs. A foot doctor in Walnutport discovered it six weeks after her accident. She had seen ortho's before that and said her ankle was sprained. She had surgery several years later at Temple Univ. Hospital by a foot doctor.
He operated on both legs at the same time and kept her on epidurals for 10 days so it wouldn't move farther. She fought and fought, got epidurals and would leave the hospital in pain to go to her daughter's games. One of my granddaughters raised $21,000 for RSD research to find a cure for her Senior Project. She still has an account open at PNC on First Street, Lehighton. It is for research to collect donations. RSDHope is a great sight on the internet. It was started by parents who had a son who has had it for over 30 years. They do much for the disease. There are treatments overseas where they put the patient in a coma for a week or two and then when they wake up the disease has settled down.
The U.S hasn't approved as yet. RSD Hope has all the latest. My daughter also tried to get to see Dr. Swartzman. It is my understanding he has the disease himself.
Could you please give Samantha or her mother my name? I would especially like to talk to her mother and her. People just don't understand the actual pain these people go through. I worked in GH Hospital in the ER for almost a year and had to quit because of some of the remarks that were made by the employees there calling them druggies, etc. for coming in with such pain and they just thought they were looking for drugs. You could see pain in their face. I am sure there are some who do take advantage.
There is such a high incidence of suicide from this disease. It is hard on the family and friends because there is really nothing you can do to help except try to understand. One of my big priorities in life is to make people aware of how the smallest bump or twist to a nerve can cause such excruciating pain and ruin peoples lives. If you or anyone ever needs to talk, let me know. We went to the Montel Show and asked him about RSD as he has MS which also stems from nerve problems and is connected to RSD but not as painful.
Thank you for your article and please do some follow-ups to make people aware.
I took an RSD patient to a doctor in Allentown for allergies. She also was a nurse and in very bad shape. When I said who I was he knew of my daughter because his wife also has RSD and she met her at a group meeting. He is a very nice man and has contributed a lot of time to patients with the disease.
236 Indian Hill Road