So, I have created this campaign, to help support my sister in law. She is an amazing mother, wife and sister....She fights tremendously to make it through each day with a very rare disease that has NO CURE. To me, there is no one who deserves this help more than her and her family. She is such a caring, selfless, devoted person.
Please find it in your hearts to help....no donation is too small...Every penny counts....
Tracey experiences excruciating burning pain in her left foot. Her right arm burns like it is being held over a camp fire. Her skin is so sensitive that she hardly ever wears shoes and has to wear soft fabric. She is extremely sensitive to cold temperatures, and little things like washing her skin can be torture. The water pressure in the shower hurts, drying off with a towel hurts, brushing her hair is sometimes impossible. She works at home and is wrapped in a heating blanket with pillows under her leg and her arm propped up to keep it from moving too much. She cries every day because the pain is so unbearable that she feels like she is being tortured. She hardly ever sleeps and when she does sleep her husband says she sometimes moans and cries. Tracey has nightmares that she is being run over by a train, lit on fire, burned with a torch, cut with razor blades, etc. She has severe anxiety, panic attacks and depression and often she contemplates suicide.
Tracey had back surgery to repair ruptured discs in 2007. When she woke up from surgery her foot was swollen, dark in color, and very painful. Doctors told her to give it time and it would probably get better. It didn’t. The appearance got better but the pain and sensitivity just got worse and she was ultimately diagnosed with RSD.
Tracey has spent the last several years trying every treatment the doctors recommended. She has had physical therapy, desensitization therapy, nerve blocks, steroid injections, more than twenty medications. In 2012, she was operated on again, but this time to add an epidural spine stimulator. Nothing has worked. Now the RSD encompasses her whole left leg and her entire right arm and continues to spread.
Calmare Treatment was started in 2008 and is significantly helping people with RSD, cancer patients, and soldiers with traumatic injuries. It is only available in 22 locations around the United States. The cost is estimated at $3800. The treatment regimen will be done outpatient over the course of 10-20 treatments. She will need to have a caregiver present throughout the process. The treatment is not available where Tracey lives, so she will have significant travel costs. If Calmare is unsuccessful the treatment will be stopped after the three day trial period.
The last possible treatment available to treat this disease in the United States is Ketamine infusion. Ketamine coma/infusion therapy has shown to provide effective short term relief for RSD sufferers. It has been used primarily in Germany and Mexico for about twenty years. It is a highly invasive and extremely risky treatment. It is being offered at the University of Florida, RSD Research Foundation. At this point, Tracey’s primary MD has cautioned Tracey against trying this because of the potential side effects. However, because Tracey now feels that she can no longer continue to live in agony she is willing to try the treatment. Again the cost for this treatment is substantially high.
Tracey already has nearly $8000 in medical bills for copayments and deductibles not covered by insurance.
CRPS/RSD : http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome
- Paulette Remillard
- colleen bishop
- Lillian Woodard
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