We Need Your Help! PDF Print E-mail
Tuesday, 09 March 2010 20:51
Today, the Scleroderma Care Foundation embarks upon a mission of vital importance, and we are counting on your help.

One of our dearest Scleroderma patients and friend, Agnes Basil-James, is on the verge of Renal or kidney failure and we are seeking out a qualified kidney donor. Currently, her kidneys are operating at around 2% efficiency and she undergoes dialysis treatment several times per week. Agnes is also the longest known survivor of Scleroderma in Trinidad & Tobago, having been diagnosed with the disease in 1986, some 24 years ago.

As many are aware, Systemic Scleroderma can cause musculoskeletal, pulmonary, gastrointestinal, renal, and other complications. Renal involvement in Scleroderma is typically considered a poor prognostic factor and frequent cause of death. Approximately 5-10% of all Scleroderma patients develop renal crisis at some point in the course of their disease, and is most common in diffuse coetaneous Scleroderma, often associated with antibodies against RNA polymerase (in 59% of cases). Many proceed to dialysis, although this can be stopped within three years in about a third of all cases.

Our programme, for as long as it takes, would seek to find an applicable donor for Agnes. From today, we would be featuring several articles on our site, on the nature and function of the kidneys, and associated renal involvement in Scleroderma. We also seek to provide some assistive and invaluable information on how you can become an organ donor yourself, along with tips for taking much better care of your very own kidneys.

It is our very sincere hope that someone out there, with blood group O, reading this, would be willing to come forward and assist Agnes. We would also like to encourage everyone reading this to please share with family, friends, co-workers, and associates, as our request for assistance may just reach the right person.

Agnes has been so kind as to share with us all, her story, which you can read here. For more information, please do feel free to contact us via email here, or phone at 756-3930 or 685-3213. Also, join us on Facebook or Twitter, where we would post updates as we progress.

Thank you.

Adelwyn Holder
President, Scleroderma Care Foundation
 
More articles :

» Genetics of Scleroderma: Implications For Personalized Medicine

Significant advances have been made in understanding the genetic basis of systemic sclerosis (scleroderma) in recent years. Can these discoveries lead to individualized monitoring and treatment? Besides robustly replicated genetic susceptibility...

» TLR4 Protein Implicated In The Fibrosis Associated With Scleroderma

An international multi-disciplinary research team led by scientists has uncovered a new role for the protein toll-like receptor 4 (TLR4) in the development of tissue fibrosis, or scarring.Recently reported in the , this finding has implications for...

» Do You Need To Alter Your Diet?

According to Chrissy Carroll, a registered dietitian and certified personal trainer with the , Scleroderma can present differently in each affected person, and diet recommendations are typically targeted toward specific symptoms. She indicated that...

» Endothelin Drugs Benefit Those With Pulmonary Hypertension

Breaking news from has reported that recent research to block the effects of endothelin, a powerful substance that constricts blood vessels and stimulates cell growth, has led to successful treatment of and provides hope for treating other chronic...

» Unite Against Scleroderma A Great Success

Our very first Scleroderma Awareness Walk, "Unite Against Scleroderma" was a great success. Sunday May 1st was a dream that became a reality, simply because family and friends of the Foundation also wanted the community of Trinidad and Tobago to be...

» Children Get Scleroderma Too

Juvenile is a rare childhood condition characterized by fibrosis of the skin and internal organs. Clinical manifestations of childhood Scleroderma are different from adult disease and early recognition, correct classification and treatment can...