The Voice of Sickle Cell

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Christopher Kelley
6 years ago
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6 Our Mission Sickle Cell Support Services is organized exclusively for charitable, scientific and educational purposes.

1 The Voice of Sickle Cell 1 Sickle Cell Support Services Quarterly Newsletter ISSUE 8 January 2015 SCSS Golf Tournament P. 1 SCSS CAMP 2015 P. 2 Meet Kennedee P. 3 Sickle Cell In the News P. 4 The Voice Speaks P. 5 Upcoming Events P. 6 Our Mission Sickle Cell Support Services is organized exclusively for charitable, scientific and educational purposes. Sickle Cell Support Services focus is on enhancing the well-being of sickle cell patients and their families in the state of Arkansas. Services Prescription Assistance Transportation for Hospital Admission and Discharge/ Clinic Visits Winter Kits Hospital Care Kits Information and Referral Service Resource Speakers Case Coordination Advocacy and Intervention Family Grants Support Groups

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3 3 Meet Kennedee! Hello! I am Kennede McLeroy- Charles. I am 16 years old and I live with Sickle Cell plus Beta Thalasssemia (Hb S B+) every day. Making straight A s is a priority in my book, but math comes as a hobby to me. I love volunteering, attending school and church events, and spending time with my family and friends. Christ is the center of my life; I wouldn t be here without Him! When I was diagnosed at age 4, my family was baffled! No one in either family had the disease. My mom says that I am special because of it. Friends and family make my sickle cell life great. Nurse Angela Mull and the doctors at ACH encouraged my mother to become more knowledgeable about Sickle Cell Disease. My mom equipped us both with the knowledge and which treatment plan works best for me. Along with that plan, came and introduction to Mr. Germaine and The Sickle Cell Enrichment Camp, I had never been to camp before and I was a little frightened at first. Now, I have attended Sickle Enrichment Camp for several summers and I look forward to becoming a camp counselor next summer! I enjoy being around others, especially teens and children, who understand the process of my disease and who can empathize with me and not sympathize for me. I am a youth patient representative for Sickle Cell Support Services. My future educational and career goals include graduating from high school with honors and then attending the University of Arkansas at Fayetteville or Spelman College in Atlanta. I will then attend and graduate from University of Arkansas for Medical Sciences (UAMS) College of Pharmacy with special emphasis in sickle cell disease. I want to then conduct research for better management and eventually, hopefully, a cure for this potentially fatal and debilitating disease. Since I am a sickle cell patient, I feel that it is my obligation to fulfill this goal. Being sick is no fun for anyone; I know how awful it is to be a kid who is sick and in the hospital. Finding a cure for Sickle Cell Disease or even an effective medicine regime would be awesome!

4 4 SICKLE CELL IN THE NEWS: Cincinnati, Ohio, November 19, 2014 Conclusive data show that hydroxyurea therapy offers safe and effective disease management of sickle cell anemia (SCA) and reduces the risk of stroke, prompting early termination by the National Heart Lung and Blood Institute (NHLBI) of a key clinical trial studying the drug's efficacy. NHLBI officials issued the announcement today, about one year before the study was originally scheduled to end. Going by the title TWiTCH (TCD With Transfusions Changing to Hydroxyurea), the Phase III randomized clinical trial at 25 medical centers in the U.S. and Canada compared standard therapy (monthly erythrocyte transfusions) with the alternative (daily hydroxyurea) for children with elevated transcranial Doppler (TCD) velocities and high risk of stroke. "Early results indicate that TWiTCH is a success. Hydroxyurea works as well as blood transfusions to lower TCD velocities, which lowers the risk of the child having a stroke," said Russell E. Ware, MD, PhD, principal investigator of the study and director of Hematology at Cincinnati Children's Hospital Medical Center, which served as the study's Medical Coordinating Center. "A group of outside experts has been reviewing the TWiTCH data every few months to ensure the safety of children in the clinical trial and to monitor the data," Ware explained. "This group met recently and after careful consideration of the interim data results, recommended that the study be stopped since hydroxyurea worked as well as transfusions to lower TCD velocities." The NHLBI and National Institutes of Health (NIH) agreed with the recommendation. "No child should ever suffer a stroke, which is why it was so important for the NHLBI to support the TWiTCH trial," said Gary Gibbons, MD, director of the NHLBI. "This critical research finding opens the door to more treatment options for clinicians trying to prevent strokes in children living with the sickle cell disease." The study enrolled its first patient in September 2011 and included children between ages 4 and 16 years with sickle cell anemia and abnormally elevated TCD velocities, which increases their risk of developing a stroke. The current standard therapy for children with elevated TCD velocities is monthly blood transfusions. A total of 121 children were randomized: half received the standard therapy of transfusions while the other half received the alternate treatment with daily hydroxyurea, which has not yet been approved for children with sickle cell anemia. The clinical data-collection portion of the study was originally scheduled for 24 months, but collection is now being stopped early, after only half of the children have completed the treatment phase. Please read the rest of the article at the link below:

5 5 The Voice Speaks is a quarterly segment in The Voice of Sickle newsletter. The voice covers a variety of topics related to the sickle cell community. This quarter s contributing writer is LaKisha M. Johnson, Executive Director and Co-Founder of SCSS. In the Face of Pain! By LaKisha M. Johnson Pain is the leading cause of emergency department visits and hospitalizations for individuals with SCD, leading to school absenteeism and impaired health-related quality of life. The frequency of painful episodes increases as children mature from childhood into adolescence and in adults, pain can occur daily and may be consistent with a chronic pain syndrome.4 A variety of factors make pain from sickle cell disease unique among pain syndromes. Pain related to SCD can be acute or crisis, which can last from minutes to weeks; chronic as a result of tissue damage, lasting more than three months; or neuropathic, a shooting or pins and needles sensation brought on by nerve damage. Unlike other diseases associated with chronic pain such as osteoarthritis, rheumatoid arthritis, fibromyalgia and complex sympathetic dystrophy, sickle cell acute pain begins in infancy and continues to recur throughout the patient s life. With age, acute pain retains its unpredictable relapses and spawns chronic pain. Chronic pain may evolve into neuropathic pain. Acute pain, however, dominates the clinical picture. Some sickle cell patients have had bad experiences in emergency rooms and hospitals when health care professionals questioned their pain and why they wanted pain medications. Patients and health care professionals should know that wanting medications to help the severe pain of sickle cell crisis does not make a patient a drug addict and does not mean that they are trying to get high from the medications. It is important that patients are able to find a doctor who they trust to believe them and take good care of them. Germaine spent the majority of his life in some sort of pain. It wasn t because he wanted to or desired to, it came with the disease. I remember recently finding a text from him, in which I was encouraging him to take pain meds. He said, I don t want to take any more pain meds, you don t know how they make me feel, you can take them if you want to! He isn t the only one that feels this way. Many individuals living with this disease don t want the feelings that come with taking pain meds, they just want to get out of pain. Until you ve lived in chronic pain, you may never understand. Please read the article on: Sickle_Cell_Pain_Fact_Sheet_ pdf

6 Make a Donation Today! Upcoming Events New Website Launch SCSS is a volunteer based organization supported by private donations, state community level grants and our organizational fundraisers.

6 6 Make a Donation Today! Upcoming Events New Website Launch SCSS is a volunteer based organization supported by private donations, state community level grants and our organizational fundraisers. Our desire is to never have to turn away a family or child for services, so it is important that we receive community support and contributions. Every donation that comes into our organization allows us to continue programs like our enrichment camp for individuals affected by this disease. THANK YOU!!!!!! SCSS UPCOMING EVENTS: June Sickle Cell Golf Tournament June Sickle Cell Enrichment Camp September is Sickle Cell Awareness Monyh For more information on our events, please visit our website at or call us at Sickle Cell Support Services P.O. BOX 4186 Little Rock, AR

Hydroxyurea. for Sickle Cell Disease. A Guide for Starting Treatment. Hydroxyurea is a medicine proven to prevent pain from sickle cell disease.

Hydroxyurea. for Sickle Cell Disease. A Guide for Starting Treatment. Hydroxyurea is a medicine proven to prevent pain from sickle cell disease. Hydroxyurea for Sickle Cell Disease A Guide for Starting Treatment Hydroxyurea is a medicine proven to prevent pain from sickle cell disease. This handbook was created to help answer common questions about