Sickle Cell News for March –April 2015

Raising Public Awareness of Sickle Cell and Thalassaemia – New Outreach resources on the United Kingdom Government website and available for public use
The United Kingdom (UK) National Health Service Sickle Cell and Thalassaemia Screening Programme (NHSSCTSP) have published new resources as part of their strategy to improve public understanding of sickle cell disease, thalassaemia and genetic screening.
Education and outreach have been important for the NHSSCTSP because it was the first national genetic screening programme in the UK National Health Service. In 2009, the UK Sickle Cell Society was commissioned to deliver the NHSSCTSP public outreach on sickle cell. There was a lack of awareness of sickle cell and lots of stigma around the condition particularly in the high risk African and Caribbean communities most at risk of inheriting sickle cell so it was important to educate about sickle cell, testing and associated myths.
These resources now published include a good practice guide for people who commission, fund, deliver and evaluate outreach programmes, an overview of the work delivered and the research underpinning it. The resources capture the learning from years of outreach work. They include a detailed guide that explains the learning, video clips from public events and interviews with service users and people who delivered the outreach. Resources can be accessed from: (For further information contact:

SICKLE CELL Motorcycle Charity Ride & Fish Fry


The Fredericksburg QUEs of Omega Psi Phi Fraternity Inc., will have its annual SICKLE CELL Motorcycle Charity Ride & Fish Fry on 25 April 2015 in Stafford, VA in Christ-Like Ministries Church (Parking Lot). ******SATURDAY NIGHT: PURPLE MOON WITH THE QUEs at Mick’s Lounge. FREE ADMISSION******* Lots of activities, raffles, vendors, and much more. Host Hotel: Best Western, 2868 Jefferson Davis Hwy, Stafford, VA. Motorcycle Charity Ride will start at Coleman PowerSports in Woodbridge, VA. See Flyer for more info or Contact Bro Joseph Rucker for more information. 801-860-7106


Shanice Clark’s Actual Cause Of Death Revealed

Basketball star Shanice Clark passed away earlier this year. The 21-year-old student was found unresponsive in her Vulcan Village apartment on January 18. She could not be revived. Initially, investigators believed that Clark choked on a piece of gum that she fell asleep chewing. However, a recent autopsy proved otherwise.

According to USA Today, the Washington County Coroner announced that Clark actually passed away from a blood disorder. Coroner Tim Warco discovered that Clark was a carrier of the sickle cell trait, which in extremely rare cases can cause sudden death.

College Basketball Star Shanice Clark’s Actual Cause Of Death Revealed via @MadameNoire

7th Annual Sickle Cell Disease Educational Briefing

Please join the 7th Annual Sickle Cell Educational Briefing in Annapolis, MD on Tuesday, March 24, 2015 at the Miller Senate Office Building, 11 Bladen Street, 2 West Wing, Annapolis, MD. (See Agenda here)

Meet and visit State Legislators, government relations experts, health care providers and community based organizations as they explain the legislative process and re-introduce the 2014 House Bill entitled “Department of Health and Mental Hygiene – Establishment of a Sickle Cell Disease Outreach Program. The objective of the 2014 House Bill is to establish efforts to bring awareness to Sickle Cell Disease outreach programs.

Light refreshments and lunch will be served!
Transportation will be made available from two (2) locations.
– Howard University Hospital, 2041 Georgia Ave., NW, Washington, DC leaving at approximately 8AM

– Home Depot at 4121 Crain Hwy, Bowie, MD leaving at approximately 8:45AM.

For transportation please RSVP by email no later than Thursday March 19, 2015 to:

If you plan to drive, here are the directions. Please let me know by email as soon as possible, if you plan to attend, send email to:


From Washington, DC take US-50 E/New York Ave., NE to exit 24 and merge onto MD-70 S/Rowe Blvd toward Annapolis. Continue on MD-70 to 11 Bladen St., Annapolis, MD 21401.

From Maryland take 495 S/I-95 S take exit 19A to merge onto US-50 toward Annapolis, take exit 24 to merge onto MD-70 S/Rowe Blvd. toward Annapolis. Continue on MD-70 to 11 Bladen St., Annapolis, MD 21401

Click on the Link for parking instructions #18 Senate:


Angela Mason
Outreach Coordinator
Howard University
Center for Sickle Cell Disease
1840 7th Street, N.W. Suite 202
Washington, DC 20001

Rapper Wordz, beats odds with SCD

Kenneth Borner, also known by his rapper name Wordz, has come a long way since his youth. He was diagnosed with sickle cell anemia when he was 3 months old, and doctors said that he wouldn’t survive past 12. Now the 27-year-old northwest resident said he owes his life to God.
“Every few years, I was told that I only had a short time to live,” Borner said. “I know that me being alive is nothing short of a miracle. Rapping has helped me express myself in ways I never thought I could.”
Besides dealing with his disease, his life had another rough start.
While living in Minnesota, Borner said he was jumped and recruited into a gang when he was in seventh grade and began experimenting with drugs.
Since he couldn’t play sports due to his illness, he found a passion for rapping that same year. He began rapping to the lyrics of Tupac, Lil Wayne and Jay-Z.
A few months later, he began writing his own lyrics.
“Honestly, being in a gang didn’t make me forget about my illness, but once I started rapping, it was like I had something,” Borner said. “I was able to rap about my struggle in life and the things that I’ve been through.”
Borner and his mother moved to Las Vegas in 2004.
After Borner’s mother met pastor Gregory Kirby from Come Unto Me Ministries, Kirby persuaded the then-16-year-old to attend a service.
He also convinced the musician to change his secular rap music into something more meaningful and spiritual.

Sickle Cell Transition E-Learning for Teens SCD

St. Jude Children’s Research Hospital, Department of Hematology, Comprehensive Sickle Cell Center, developed a series of educational modules “Sickle Cell Transition E-Learning Program (STEP) for Teens with Sickle Cell Disease”. The STEP program consists of videos designed as educational modules with interactive pre and post quizzes. The modules were designed as supplemental educational tools to help teens with sickle cell disease successfully transition from pediatric to adult medical care. There are 6 modules; a short synopsis of each module is provided below:

Module 1 : Sickle Cell and Me

This module provides a general definition of sickle cell disease, and common signs and symptoms of sickle cell disease.

Module 2: Healthy Living and Sickle Cell Disease

This module reviews the importance of nutrition and exercise for a teen with sickle cell disease; the effects of alcohol and tobacco use in a person with sickle cell disease; and the changes that occur during puberty in teens with sickle cell disease.

Module 3: Pain, Infection, and Sickle Cell Disease

This module reviews possible pain triggers, the importance of preventative pain measures, and treatment for mild or moderate pain episodes for a teen with sickle cell disease. Additionally, the video discusses signs and symptoms of infection in a person with sickle cell disease and the importance of knowing the proper response to signs of infection.

Module 4: Other Complications of Sickle Cell Disease

This module provides the basis for a preliminary discussion of some of the complications that may occur in a teen with sickle cell disease: stroke, avascular necrosis, acute chest syndrome, retinopathy, priapism, osteomyelitis, leg ulcers, gallstones, and some renal complication.

Module 5: Genes and Sickle Cell Disease

After reviewing this module, teens with sickle cell disease should be able to discuss the difference between sickle cell disease and sickle cell trait; to describe how genes are related to sickle cell disease; and to be able to name the most common types of sickle cell disease in the United States.

Module 6: Self-Advocacy for Teens with Sickle Cell Disease

The purpose of this module is to help teens with sickle cell disease become self-advocates by learning to communicate effectively; to assert his or her own interests; to speak up; to partner up; and to be firm, positive, and assertive. At the end of the video, there are two scenarios to help practice these skills.

You can access the modules at ; click the link on the left, “Sickle Cell Interactive Teen Education Video” , and you will be directed to the links for the educational modules. The modules are available free of charge. The modules are not intended to take the place of the care and attention of your personal doctor. Our aim is to promote active participation in your care and treatment by providing information and supplemental education. Questions about individual health concerns or specific treatment options should be discussed with your doctor. Development of the modules were funded St. Jude Children’s Research Hospital, ALSAC, and a grant from the Verizon Foundation.

Sickle Cell Disease Patient Study 2015

Dr. Chioma Ekechi, Clinical Coordinator, Adult Transition Program, Center for Sickle Cell Disease, Howard University would like to offer persons with SCD to participate in an on-going study.

This study, “Adult Transitioning Program amongst Sickle Cell Disease Patients”, is being sponsored by the District Of Columbia Government with the aim of proposing policies that will  benefit Sickle Cell Disease patients.

For this to be possible, the Center for Sickle Cell Disease at Howard University needs to collect candid response data from patients with SCD in posed in the study questionnaire.

Participants must be at least 13years old and reside in DC, Maryland or Virginia area. Participants will be compensated for their time and help towards the fulfillment of this study program.

The Adult Transition Program for Center for Sickle Cell Disease also organizes educational health workshops and in collaboration with the Advocate of Justice of Education Department has other workshops, all geared towards giving individuals and their families a tailored  wholesome, fulfilling wellness approach to battle this life-long health challenge.
For more information visit the link below

Show Sickle Cell Patients Love this Valentine’s Day

“Minority Heartdonors, African Americans in particular, have rare compatibility traits in their blood that are unique to the African-American community. Therefore, optimal blood matches for African Americans will come from members with their same ethnic background. However, while African-Americans comprise nearly 13 percent of the US population, less than one percent are blood donors.”

INOVA Minority Donor Outreach & Education

More than 44,000 blood donations are needed daily to meet the critical need for blood supply. While progress in medicine has helped reduced the severity of SCD, donations of blood closely matching that of adults and children with Sickle Cell disease is badly needed to save lives!

One of approximately 80,000 African Americans in the U.S. has SCD. Without the right blood match for a transfusion, immune reactions can develop from a transfusion causing more complications that make future transfusions less effective.
If this is your first time donating blood, the link has information and facts to help you better understand the process.

Thank you for saving the life of a Sickle Cell patient and for making a difference in the lives of people who love them.