Proclamation Calls Attention to Little Known Disease
Eastern Group Publications, Rose Marie Soto, Posted: Apr 15, 2001
The proclamation of Deaf Awareness Month in May brought together Madres del Este de Los Angeles Santa Isabel and Los Angeles City Councilman Nick Pacheco for the first ever Deaf Awareness celebration at Olvera Street last weekend to call attention to the hearing impaired community that so often goes unnoticed.
In Sacramento, State Senator Liz Figueroa, 10th SD, introduced a resolution in the California Legislature to proclaim May 2002 as Reflex Sympathetic Dystrophy, RSD, Syndrome Awareness Month to call attention to another community that has also gone unnoticed, a community of sufferers who live in chronic pain caused by a disease most people, and some medical professionals have never heard of.
Spearheading the attention that the resolution hopefully will generate for the millions in the United States who are affected by RSD is Cynthia Toussaint, who 18 years ago at the age of 21 lost her dream of becoming a ballerina when she fell victim to the disease. At last year’s hearing before the Senate Business and Professions Committee, Toussaint and several pain management experts presented testimony regarding this little known debilitating chronic disease that can strike anyone of any age at any time.
Toussaint is also the founder of For Grace, a nonprofit organization she has created for the purpose of raising public awareness about RSD and to advocate for crucial early medical intervention and increased medical research funding. The name of the organization is inspired by the little girl she and her partner John Garrett always wanted and will never have. The nonprofit represents their unborn child and all the Graces that will be born to other women with RSD who can have children once they are diagnosed early, treated and cured. For Grace is Toussaint’s “dream of never again” so that others will be helped before they experience the nightmare she has lived as a sufferer of RSD.
RSD, a progressive multisymptom, multisystem, neuromuscular and neurovascular disorder, is a debilitating chronic pain disease simultaneously involving nerves, muscles, blood vessels, skin, bones and tissues that can develop after a minor or major injury and if misdiagnosed or left untreated, can spread to virtually all areas of the body and ultimately lead to total disability.
Toussaint’s own battle with RSD began with a minor ballet injury that was misdiagnosed as psychological, rather than physical. Unfortunately, when her doctors ruled out the rare form of RSD, Toussaint became vulnerable to the progression of the disease throughout her body.
“For the first 13 years of my illness, my doctors told me my physical problems were ‘all in my head’ while the disease progressed through my entire body, eventually leaving me bedridden with chronic, intractable pain.”
Toussaint describes the pain as so excruciating and unbearable that it often leaves its victims emotionally depressed and suicidal. Yet, she adds that if diagnosed early, RSD sufferers can receive treatment that will enable them to lead full, productive, vital lives. Events that can cause RSD include infections, cuts, pricks of fingers or toes, soft tissue injuries, crush injuries, injury to any area rich in nerve endings, fractures, sprains, dislocations, broken bones, multiple trauma to a particular body part, surgical procedures, invasive procedures, and repetitive motion disorders, such as that which causes carpal tunnel syndrome.
Although there are several symptoms of RSD, the one common element is a constant and severe burning pain in a localized area that is out of proportion to the severity of the injury. Although there is no known cure for RSD, there is a short window of time, during which the disease can be treated, usually within the first three to six months after onset.
Living with constant pain, Toussaint is often confined to a wheelchair and many days she finds it difficult to accomplish even the most mundane activities such as writing her name. In her darkest moments, she does admit to a depression that led her to thoughts of suicide, but her thoughts now are occupied with a devotion toward raising awareness about this horrific disease that goes beyond physical suffering. Victims of progressive RSD can also suffer from great emotional and social harm that include, among suicide and depression, anxiety, isolation, career loss, financial ruin, abandonment by family and friends, and life-long disability.
Although Toussaint believes California’s proclamation calling attention to RSD is a major step toward creating public awareness, it is only the beginning. She wants so much more because so much more still needs to be done. She wants RSD sufferers to receive early medical intervention; she wants an increase in medical research funding; she wants a cure; she wants an end to the nightmare.
For more information regarding For Grace or RSD, call (818) 760.7635.
Page
1 of 1
|
