NCAA May Force Schools To Test For Sickle Cell Trait

http://www.npr.org/templates/story/story.php?storyId=121829370&ft=1&f=1003

Fifteen athletes, most of them college football players, have died in the past decade from a condition that is benign in most circumstances. They were carrying the sickle cell trait.

Kourtni Livingston, a 14-year-old girl who played basketball for DeSoto High School near Dallas, died running laps outdoors in August 2002. Then University of Missouri linebacker Aaron O'Neal died during a voluntary workout in 2005. Devaughn Darling died shortly after complaining of dizziness and chest pains during off-season conditioning exercises in February 2001 at Florida State University. Experts have found that under conditions such as extreme exertion, high altitudes and hot climate, sickle cell trait is associated with a potentially deadly blood disorder called "sickling."

In January, the National Collegiate Athletic Association is expected to decide whether it will be mandatory for colleges and universities to test athletes for sickle cell trait. But some experts are concerned that this could lead to athletes with the trait being singled out and excluded from sports.

400,000  in Ghana with Sickle Cell Disease

Dr Andrew Adjei Druye, National Focal Person, described the figure as worrying and blamed the situation on public ignorance about the genetic and sickle cell status.

It is estimated that there are currently 400,000 Ghanaians living with the disease.  Dr Druye who was speaking to the Ghana News Agency in Kumasi described the disease as deadly and counter-productive to socio-economic development.

Persistent destruction of the immune system, bones and internal organs hasten the death of patients. They also suffer chronic anaemia, and bodily pains. D.r Druye, who is also the Programmes Director of the Health Education Unit, Ghana Health Service (GHS), said since Ghana is ranked among countries with the highest population of sickle cell patients in Africa, the service is liaising with the United States Agency for International Development to establish Genetic Counselling and Testing centres across the nation.

The centres would be attached to government hospitals with the primary aim to test people for the disease, provide counselling, as well as treatment and management.He said the GHS would also train health workers especially doctors and nurses to build their capacity, knowledge and skills to give proper care and efficiently manage sickle cell patients. He advised the youth who want to marry to go for sickle cell test to know their status to help them to give birth to healthy children.

New Resource for Virginia

Message from Dr. Susan B. Shurin January 08, 2010

Dear Colleagues:

On Dec. 28, 2009, the NIH Office of the Director announced five additional Recovery Act FOAs. The NHLBI is participating in two, as listed below.  The NHLBI is also participating in four of the NIH Basic Behavioral and Social Science Opportunity Network (OppNet) ARRA opportunities, which were announced this week.  

Like all other Recovery Act RFAs, these are intended to stimulate the economy, create or retain jobs, and advance scientific progress over the next two years.  To learn more about the NHLBI opportunities, we encourage you to visit the NHLBI Recovery Act Funding and Policies page.

Comparative Effectiveness Research

Research and Research Infrastructure

NIH Basic Behavioral and Social Science Opportunity Network (OppNet)

Best regards,
Susan B. Shurin, M.D.

New Organization

 Dominique Friend has formed,"The Sickle  International Family Coalition,"

The Mission for the coalition is :            
The mission of the Sickle International Family Coalition will be to connect families affected by Sickle Cell disease and Sickle Cell Trait worldwide to ensure a comprehensive approach and quality access to health care, programs and services. 

For more info : please contact Dominique Friend @ 717.793.6294 or Email: Sickle1000@yahoo.com

Sickle cell trait (HbAS) is twice as prevalent among African Americans with end-stage renal disease (ESRD) than in the general African-American population,  http://www.renalandurologynews.com/sickle-cell-trait-highly-prevalent-in-black-esrd-patients/article/161438/

The data emerged from a study that included 188 African-American patients receiving dialysis at four centers affiliated with the University of North Carolina (UNC) Kidney Center in Chapel Hill. All subjects underwent hemoglobin phenotyping for HbAS. The study also determined HbAS prevalence in the local population by studying 6,729 African-American newborns screened for hemoglobinopathies in three North Carolina counties served by the dialysis centers.

The researchers, led by Vimal K. Derebail, MD, of the UNC Kidney Center, found that 15% of the dialysis cohort had HbAS compared with 7.1% of the screened newborns, according to report in the Journal of the American Society of Nephrology (2010; published online ahead of print). In addition, hemoglobin C trait (HbAC) occurred in 5% of the dialysis patients versus 2% in the general African-American population. ). HbAC is a hemoglobin variant found in African Americans. If an individual with this variant has a child with somebody who has HbAS, a sickle cell disease (hemoglobin SC disease) can develop in the child.

“The high prevalence these hemoglobinopathies suggests that they may contribute to progression to ESRD by providing a background of renal injury,” the investigators wrote. “Our findings also raise questions as to how the presence of HbAS or HbAC may affect management of ESRD patients.”

Epidemiologic studies have linked HbAS with microalbuminuria and proteinuria, especially among men with diabetes, and shown that African Americans with autosomal dominant polycystic kidney disease and HbAS progress to end-stage renal disease more quickly than those without the trait.

New Edition of Hope and Destiny The New Hilton Guide to Sickle Cell Disease and Sickle Cell Trait for Patients and Parents is coming this Spring fro Hilton Publishing

The popular patient and parent guide book for sickle cell disease has been completely updated with the latest in treatment and preventive therapy. There are two new co-authors joining Allan Platt PA-C: Lewis Hsu, MD, PhD and James Eckman MD

New and expanded chapters include:

* Preventive  therapy with hydroxyurea

* Blood transfusions for complication prevention

* Bone marrow transplants as cures for some and new hope for many more

* Gene therapy -  a new chapter by Betty Pace, MD

* Nutrition - the foods and supplements that help prevent sickle cell complications

* Pregnancy and issues surrounding reproduction, prenatal diagnosis, PGD and IVF, and cord blood banking.

New Pre sale offer from Hilton Publishing: for  the first 500 copies at a Pre Sale (Pre release) cost of 10.00 per book. As a Pre Sale it  requires a 50% deposit to lock in the cost. The next 500 would be at 8.48  per copy and every order of 500 or more after that would be at 50% off. They  all would be plus delivery. To order the Book you can call Hilton Publishing at  866-455-1070.

New  Sickle Cell and Stroke Education Booklet from the UK

Sickle Cell & Young Stroke Survivors (SCYSS)  Has produced a booklet in PDF format for downloading and printing
Click here for the PDF download Sickle Cell and Stroke from founder and CEO Carol Nwosu
 www.scyss.org  General e-mail: Info@scyss.org

Grants and Request for Proposals page - For the latest in grant opportunities to benefit sickle cell care, research and treatment. Click Here