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 :

» The Clinical Relevance of Autoantibodies in Scleroderma

Khanh T Ho and John D ReveillePublished: 12 February 2003Arthritis Res Ther 2003, 5:80-93 (DOI 10.1186/ar628)© 2003 BioMed Central Ltd (Print ISSN 1478-6354; Online ISSN 1478-6362)Scleroderma (systemic sclerosis) is associated with several...

» Scleroderma Foundation's 13th Annual National Patient Education Conference Is Here

Nearly 600 people are anticipated to visit the heart of San Francisco Friday, July 8, through Sunday, July 10, for the Scleroderma Foundation's 13th Annual National Patient Education Conference. Patients, family members, caregivers, doctors and...

» Study Indicates Scleroderma Mortality Rates Being Underestimated

patients have a significantly reduced life expectancy that is most likely being underestimated, delegates have heard. Most studies on scleroderma survival are based on prevalent cohorts, where no limit is placed on disease duration at the time of...

» Morphea Scleroderma

Morphea, is one of two types of localized , and a disorder characterized by excessive deposits leading to thickening of the dermis, subcutaneous tissues, or both. The cause of Scleroderma is unknown. It is important to remember that it is not...

» Researchers Gain Deeper Insights Into Causes And New Treatment Strategies For Scleroderma

Using mice, lab-grown cells and clues from a related disorder, Johns Hopkins researchers have greatly increased understanding of the causes of , showing that a critical culprit is a defect in the way certain cells communicate with their structural...

» Long Term Methotrexate Therapy Beneficial for Juvenile Localized Scleroderma

Researchers in Italy evaluated 65 patients with Juvenile Localized (JLS; or) previously enrolled in a double blind, randomized control trial and treated for the first 3 months with oral methotrexate (MTX; 15 mg/m2 weekly) and prednisone (1 mg/kg...