Sickle Cell Transition E-Learning Program (STEP) for Teens with Sickle Cell Disease

http://www.stjude.org/sicklecell

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.

 

Marrow transplant frees sickle cell sufferer from pain

http://www.usatoday.com/story/news/nation/2015/01/29/marrow-transplant-frees-sickle-cell-sufferer-from-pain/22557607/

ROCHESTER, N.Y. — With sickle cell anemia, it's never just one kind of pain.

Sometimes it's a vicious ambush, fast and pulsating. Sometimes it settles in slowly and stays for days, throbbing deep in the bones.

Sometimes the pain is in one spot. Sometimes it's in three. Sometimes it's everywhere, hundreds of knives, jabbing and cutting from head to toe, grinding down the body and foreclosing on any hope for the future.

"It's the worst feeling in the world," said Stephanie Ramos of Irondequoit. "It's like your body is attacking its own self. Beating up on its own self. ... It's a horrible disease. I hate it."

Ramos knows sickle cell anemia well. She was born with it 25 years ago. Doctors told her mother then that she would be lucky to reach adulthood; each birthday was a celebration and, quietly, a foreboding.

What would the next year bring? How many crises, how many trips to the hospital? How much more to be endured, and for how much longer?

It's a disease of pain, and three years ago, Ramos was exhausted by it.

Wixon: Sickle cell disease can't hold back Lincoln's Tafari Witter through sporting, academic endeavors

http://www.dallasnews.com/sports/high-schools/headlines/20150216-wixon-sickle-cell-disease-can-t-hold-back-lincoln-s-tafari-witter-through-sporting-academic-endeavors.ece

Tafari Witter is near midcourt, bent forward, tugging on the bottom of his shorts, trying to catch his breath. A substitute is headed to the scorer’s table, but Witter looks over to the sidelines and, with a wave of his hand, indicates he’s not leaving the game.

It might be the only time that Lincoln’s starting point guard doesn’t have his priorities straight.

Witter is a razor-sharp student who is on track to be valedictorian of Lincoln’s Class of 2015. He loves Advanced Placement Calculus BC, is part of the Dallas ISD’s Future Leaders Program and in the fall will attend Texas, where he eventually wants to get a master’s degree in business administration.

NBA point guard Derrick Rose is among the people who inspire him, but so is a star from a very different arena: theoretical physicist Stephen Hawking.

Lincoln coach Cedric Patterson smiles when he hears that.

“He’s a unique kid,” Patterson said.

Witter is so unique, and interesting, and engaging, it’s hard to squeeze his sickle cell disease into the conversation. And he likes it that way.

 

Rapper beats medical odds, finds new path in spirituality

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

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.