Adults With Sickle Cell and Hydroxyurea

Nicolas Stettler, MD, MSCE1; Colleen M. McKiernan, MSPH1; Court Q. Melin, BS1; Oluwakayode O. Adejoro, MD, MPH1; Nancy B. Walczak, PhD, FSA1

Proportion of Adults With Sickle Cell Anemia and Pain Crises Receiving Hydroxyurea Nicolas Stettler, MD, MSCE1; Colleen M. McKiernan, MSPH1; Court Q. Melin, BS1; Oluwakayode O. Adejoro, MD, MPH1; Nancy B. Walczak, PhD, FSA1

JAMA. 2015;313(16):1671-1672. doi:10.1001/jama.2015.3075 at http://jama.jamanetwork.com/article.aspx?articleid=2279701

Few American adults with sickle cell anemia are getting a recommended medication that can help them manage pain, breathing problems and other debilitating symptoms, according to a new study. Using a national database, researchers found that less than one-quarter of sickle cell patients who should have been taking a drug called hydroxyurea actually were.

“This is a medication that’s highly beneficial and yet most people aren’t getting it,” said George Buchanan, MD, a sickle cell expert, and a professor at the University of Texas Southwestern Medical Center at Dallas, who was not involved in the new study.

Findings from the study were reported in the April 28 issue of the Journal of the American Medical Association. http://www.theskanner.com/news/health/22714-few-sickle-cell-patients-recieve-beneficial-drug

Santonio Holmes Raises Awareness of Sickle Cell Disease

NFL player Santonio Holmes knows the pain of sickle cell disease. He sees it in his 11-year-old son, T.J., as the boy struggles against the blood disorder that primarily affects people of African descent. A disease that causes intense pain and even life-threatening situations, it’s a tax on the body and the wallet as families often scramble to pay for expensive treatments. Holmes wants to change that. President of the III & Long Foundation, Holmes was in Washington, D.C., recently to meet with members of Congress and health care influencers, advocating for sickle cell research, awareness and treatment.

“As a parent of someone who has been diagnosed with sickle cell, I know how financially expensive and emotionally taxing the hospital visits, bills, treatment and medication can be,” said Holmes. “My goal is to raise awareness and help families that cannot afford the proper treatments by providing grants to organizations that assist these deserving families.”

Local mom starts new career to help sons fight sickle cell disease

Local mom starts new career to help sons fight sickle cell disease

Years ago, Tiffany was a school teacher. But after she became a mom, her 9 to 5 changed. “I was a stay at home mom,” Tiffany told 8News Anchor Ava-joye Burnett.

Both of Tiffany’s sons were born with sickle cell disease; the disorder can lead to serious health challenges and excruciating pain.

“You get a child who is crying, ‘Mom, Mom help me, I’m in pain,’ explains Tiffany, “and there is nothing that you can do because they are on morphine and the morphine pump. The doctor or the nurse can possible say, ‘I can’t give your child enough morphine because the pain is immeasurable.’”

The boys are now 12 and 8, trying to live normal lives with a tough disease. Tiffany also has a new career: working at Virginia Blood Services. There’s now a big push here in central Virginia to get more blood donations from African Americans.

“I think a lot of times, people, they don’t see where [their] blood goes, so it’s hard for them to really think and put their heads around that,” says Michelle Westbay, Marketing Director for Virginia Blood Services. “But in the end, you really are supporting lives.” Donations help with blood transfusions, and transfusions help to restore a patient’s body when the disease attacks. There are so many side effects—one of them being stroke—even for kids.

But another major part of the job at Virginia Blood Services is done in labs. Researchers are always looking for rare blood that will go only to patients who desperately need it. In some cases, it’s a patient’s only hope of survival.

Beth Johnson, of Virginia Blood Services, says they handle rare blood in a special way. “Once we find the rare blood, we stash it away so no body else can have it, except for us and we send it out to re patients who absolutely need it. Aside from working at Virginia Blood Services, Tiffany Dews is also continuing her work outside of the labs, within local communities. Her mission is to get more African Americans to donate blood that could help sickle cell patients—like her two sons.

“No one can see the damage it’s doing to their body as they get older,” Tiffany says. “A lot of times people give up, because no one understands the pain that they go though.”

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: https://www.gov.uk/search?q=sickle+cell+outreach (For further information contact: iyamide.thomas@sicklecellsociety.org

SICKLE CELL Motorcycle Charity Ride & Fish Fry

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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
https://eventbrite.com/event/15918608988/

 

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 http://awe.sm/eLpca 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: amason@howard.edu

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: amason@howard.edu

DIRECTIONS:

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:
http://msa.maryland.gov/msa/mdmanual/3
7mun/annapolis/html/mapgovbldg.html

Regards,

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

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.

http://www.reviewjournal.com/entertainment/music/rapper-beats-medical-odds-finds-new-path-spirituality

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 http://www.stjude.org/sicklecell ; 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.