To whom it may concern:

I am writing to you in hopes that you will take a few moments and read the following information and help RSD/CRPS patients raise public awareness of this horrible disease. Below I will share with you Facts or RSD/CRPS, Basics of RSD/CRPS, pictures of implantation devices, pictures of effected areas of RSD/CRPS patients, my story, support group information, website & organization information, ways you can help raise awareness.

Facts of RSD/CRPS:

Reflex Sympathetic Dystrophy Syndrome (RSD) - also known as Complex Regional Pain Syndrome (CRPS) - is a chronic neurological syndrome characterized by:

• severe burning pain
• pathological changes in bone and skin
• excessive sweating 
• tissue swelling
• extreme sensitivity to touch

There are Two Types of CRPS - Type I and Type II. (Possible 3 - 4 stages)

The best description of RSD/CRPS is in terms of an injury to a nerve or soft tissue (e.g. broken bone) that does not follow the normal healing path. The development of RSD/CRPS does not appear to depend on the magnitude of the injury (e.g. a sliver in the finger can trigger the disease). In fact, the injury may be so slight that the patient may not recall ever having received an injury. For reasons we do not understand, the sympathetic nervous system seems to assume an abnormal function after an injury. There is no single laboratory test to diagnose RSD/CRPS. Therefore, the physician must assess and document both subjective complaints (medical history) and, if present, objective findings (physical examination), in order to support the diagnosis. There is a natural tendency to rush to the diagnosis of RSD/CRPS with minimal objective findings because early diagnosis is critical. If undiagnosed and untreated, RSD/CRPS can spread to all extremities, making the rehabilitation process a much more difficult one. If diagnosed early, physicians can use mobilization of the affected extremity (physical therapy) and sympathetic nerve blocks to cure or mitigate the disease. If left untreated, RSD/CRPS can become extremely devastating due to permanent deformities and chronic pain. There are no studies showing that RSD/CRPS affects the patient’s life span. The potential exists for long-term financial consequences. At an advanced state of the illness, patients may have significant psychosocial and psychiatric problems; they may have dependency on narcotics and may be completely incapacitated by the disease. The treatment of patients with advanced RSD is a challenging and time-consuming task.

Basics of RSD/CRPS & statements from RSD/CRPS patients:

• RSD is a debilitating disease which affects an estimated 6-7 million people and numbers are rising. Although the number of RSD victims continues to rise, research and treatments are virtually non-existent!! It is now believed that for every Aids patient in America, there are atleast 10 times as many RSD patients!

• RSD patients are often told that the pain is in their head and is a physcological problem which this is not true. Many are told they are looking for sympathy or attention, again not true. All RSD patients are not looking for any sympathy; all they are looking for is anyone to understand them such as family, friends and their treating doctors. It is known that if there is a lack of physical evidence then it is not believed. Some RSD patients have no physical signs of their pain until later stages. This is why it is believed to be in their head. 

• RSD patients tend to lose our jobs due to the disease and this is often followed by losing everything that means anything to them such as their homes, possessions and even their families!! Very far & few between does the RSD patient have support of loved ones because of lack of understanding and or knowing their lives will never be the same again. The ones who do are extremely lucky.

• Many of RSD patients cannot find doctors who know how to treat RSD. If an RSD patient finds a doctor who treats RSD, often they are guinea pigs until they find the appropriate treatment as it is been found that not one person can be treated successfully as another. Not one patient can be treated the same nor are the symptoms. RSD is presently not being taught in the medical schools because it is known as “The mystery disease and complicated

• RSD is a chronic disease which affects the nerves, muscles, skin, bones, and even the internal organs of one's body. Advanced stages can be called Full body RSD, and or have mirroring affects where original affected limb goes to the opposite side and has the same affect. Some instances of RSD problems are with loud noises, headaches, sight & hearing problems, lack of interests in sexual activity and or loss of, unable to wear clothing or have anyone touch the affected area, even wind causing extreme pain. Many RSD patients suffer from other effects from RSD/CRPS such as constant burning pain, dizzy spells, black outs, mood swings, depression, insomnia, lack of energy, memory problems, and thoughts of suicide. Many RSD patients have or will have unsuccessful nerve blocks, physical therapy, surgeries, implantation of medical devices (see pictures below). The finally given prescriptions for Opiod medications and told to live with it. Too many RSD patients go misdiagnosed and made to suffer because of lack of treatment which causes their pain and symptoms to get worse. It causes many of them to be diagnosed too late. This leads to devastating problems with RSD.