ATLANTA - Sickle cell patients grow up, but face new challenges About 30 years ago, most kids with sickle cell disease died in childhood http://www.msnbc.msn.com/id/38489954/ns/health-more_health_news/
Bioethicists urge docs to build trust with sickle-cell patients http://gazette.jhu.edu/2010/08/02/bioethicists-urge-docs-to-build-trust-with-sickle-cell-patients/
Adults Struggle with What Used to Be Child's Blood Disorder http://www.livescience.com/health/sickle-cell-disease-adult-care-100801.html and http://www.livescience.com/health/what-is-sickle-cell-disease-100730.html
Sickle cell's threat to adults: For those carrying chronic blood disease, vigilance is key http://www.nydailynews.com/lifestyle/health/2010/08/04/2010-08-04_sickle_cells_threat_to_adults_.html
NCAA genetic screening rule sparks discrimination concerns http://edition.cnn.com/2010/HEALTH/08/04/ncaa.sickle.genetic.screening/?hpt=T2&imw=Y#fbid=Xiu9AFeX9kx&wom=false
Rare blood disease battle hits siblings http://www.heraldsun.com.au/news/victoria/caring-for-each-other-in-blood-disease-battle/story-e6frf7kx-1225899744415
Once a sickler, now fully healed from the disease http://www.monitor.co.ug/Magazines/Health%20&%20Living/-/689846/974972/-/2tdel9z/-/
The NHLBI has released a Request for Information (RFI) for the Identification of Clinical Trial Design, Monitoring, and Analysis Experts with an Interest in Multi-Center Clinical Studies in Hemoglobinopathies. The web link for details : http://grants.nih.gov/grants/guide/notice-files/NOT-HL-11-111.html
The Sickle Cell Disease Association of America (SCDAA) today 8/4/2010 announced its keynote presenters for the upcoming 38th Annual Convention being held from September 21st through 24th at the Gaylord National Hotel & Conference Center in Washington, D.C. The theme for this year’s convention is “Giving New Voice to Sickle Cell ~ 100 Years of Recognition.” The SCDAA Annual Convention is a time when health professionals and individuals with sickle cell disease and related conditions come together to learn the latest developments in research, treatment, and services related to the disease.
This year’s event is particularly meaningful because, according to the Centers for Disease Control & Prevention, it was 100 years ago (November 1910), that the Archives of Internal Medicine published a report by Dr. James B. Herrick titled 'Peculiar Elongated and Sickle-shaped Red Blood Corpuscles in a Case of Severe Anemia'. In this groundbreaking study, Dr. Herrick described the experience of a young dental student from Grenada attending the Chicago College of Dental Surgery. Soon after arriving to dental school, the student sought medical attention and the abnormal shaped red blood cells in the student were first noted. These cells, along with anemia and symptoms typical of the disease soon became known as 'sickle cell anemia'. This year marks the 100th anniversary of this important case report. (http://www.cdc.gov/features/sicklecell/)
This year’s keynote lecturers include:
1. Kofi A. Anie, PhD – Dr. Anie is currently affiliated with the Haematology and Sickle Cell Centre at the Central Middlesex Hospital in London, England and will deliver the Dr. Walter Clement Noel Lecture on Friday, September 24th. This lecture’s namesake (Dr. Walter Clement Noel) is recognized as the first sickle cell patient who was evaluated by Dr. James Herrick in 1910. It is this medical case that marks the 100th anniversary of the discovery of the disease.
2. Griffin Rodgers, M.D., M.A.C.P. - Dr. Rodgers is currently Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) in Washington, D.C. and will deliver the Clarice D. Reid, M.D. Lecture on Friday, September 24th. This lecture’s namesake (Dr. Clarice D. Reid) led the National Sickle Cell Disease Program for many years and all of the research that currently benefits patients today. Her career at the National Institute of Health was well decorated as she received many awards, to include the Presidential Meritorious Executive Rank Award. Dr. Reid was also honored as one of “America’s Leading Black Doctors” by Black Enterprise Magazine. Dr. Reid remains very active in professional and civic activities today.
3. J.J. Strouse, M.D., PhD – Dr. Strouse is currently the Assistant Professor of Pediatrics and Medicine at the Johns Hopkins University School of Medicine in Baltimore, Maryland and will deliver the Charles F. Whitten Lecture on Thursday, September 23rd. This Lecture’s namesake (Dr. Charles F. Whitten) was the Co-founder and President Emeritus of SCDAA and distinguished professor and Associate Dean Emeritus at the Wayne State University School of Medicine. It was at Wayne State University where Dr. Whitten was Director of the University’s Comprehensive Sickle Cell Center for 19 years. His contributions to sickle cell activities at both the local and national level are both well-documented and groundbreaking. Dr Whitten was dedicated to the cause of sickle cell disease until his death in August of 2008.
Duane N. Bruce, J.D., LL.M, Chair of the Board of Directors of the Sickle Cell Disease Association of America said, “We are honored these distinguished health professionals will dedicate their time and lend their career insights to the sickle cell community and its many stakeholders at our Annual Convention during this milestone year. Their collective presence strengthens our knowledge base as we continue to serve the many people that so very much depend on our advocacy. This year promises to be an incredible event.”
To register or learn more about the 38th Annual Convention being held from September 21st through 24th at the Gaylord National Hotel & Conference Center in Washington, D.C., log onto www.scdaaconvention.com or call the SCDAA toll free at 800-421-8453.
Articles From th Medical Literature
1. The burden of emergency department use for sickle-cell disease: An analysis of the national emergency department sample database.
Lanzkron S, Carroll CP, Haywood C Jr.
Am J Hematol. 2010 Jun 29. [Epub ahead of print] No abstract available.
2. Effect of Oral Arginine Supplementation on Exhaled Nitric Oxide Concentration in Sickle Cell Anemia and Acute Chest Syndrome.
Sullivan KJ, Kissoon N, Sandler E, Gauger C, Froyen M, Duckworth L, Brown M, Murphy S.
J Pediatr Hematol Oncol. 2010 Aug 18. [Epub ahead of print]
3. Airway hyper-responsiveness in children With sickle cell anemia.
Field JJ, Stocks J, Kirkham FJ, Rosen CL, Dietzen DJ, Semon T, Kirkby J, Bates P, Seicean S, Debaun MR, Redline S, Strunk RC.
Chest. 2010 Aug 19. [Epub ahead of print]
4. The impact of sickle cell trait on glycated haemoglobin in diabetes mellitus.
Bleyer AJ, Vidya S, Sujata L, Russell GB, Akinnifesi D, Hire D, Shihabi Z, Knovich MA, Daeihagh P, Calles J, Freedman BI.
Diabet Med. 2010 Sep;27(9):1012-6.
5. Neonatal screening for hemoglobinopathies: results of a public health system in South Brazil.
Wagner SC, de Castro SM, Gonzalez TP, Santin AP, Zaleski CF, Azevedo LA, Dreau H, Henderson S, Old J, Hutz MH.
Genet Test Mol Biomarkers. 2010 Aug;14(4):565-9.
6. Sickle cell trait as a cause of splenic infarction while climbing mt. Fuji.
Funakoshi H, Takada T, Miyahara M, Tsukamoto T, Noda K, Ohira Y, Ikusaka M.
Intern Med. 2010;49(16):1827-9. Epub 2010 Aug 13.
7. Minority donation in the United States: challenges and needs.
Shaz BH, Hillyer CD.
Curr Opin Hematol. 2010 Aug 16. [Epub ahead of print]
8. Cost-effectiveness of adenotonsillectomy in reducing obstructive sleep apnea, cerebrovascular ischemia, vaso-occlusive pain, and ACS episodes in pediatric sickle cell disease.
Tripathi A, Jerrell JM, Stallworth JR.
Ann Hematol. 2010 Aug 17. [Epub ahead of print]
9. Hematopoietic stem cell mobilization strategies for gene therapy of beta thalassemia and sickle cell disease.
Yannaki E, Stamatoyannopoulos G.
Ann N Y Acad Sci. 2010 Aug;1202(1):59-63.
10. Therapy for beta-globinopathies: a brief review and determinants for successful and safe correction.
Perumbeti A, Malik P.
Ann N Y Acad Sci. 2010 Aug;1202(1):36-44.
11. Major Challenges for Gene Therapy of Thalassemia and Sickle Cell Disease.
Papanikolaou E, Anagnou NP.
Curr Gene Ther. 2010 Aug 16. [Epub ahead of print]
12. Toward high quality medical care for sickle cell disease: are we there yet?
J Pediatr (Rio J). 2010 Jul-Aug;86(4):256-8. No abstract available.
13. Pulmonary hypertension and NO in sickle cell.
Gladwin MT, Barst RJ, Castro OL, Gordeuk VR, Hillery CA, Kato GJ, Kim-Shapiro DB, Machado R, Morris CR, Steinberg MH, Vichinsky EP.
Blood. 2010 Aug 5;116(5):852-4. No abstract available.
PMID: 20688967 [PubMed - in process] Free PMC Article Free text
14. Gene therapy for sickle cell disease.
Olowoyeye A, Okwundu CI.
Cochrane Database Syst Rev. 2010 Aug 4;8:CD007652. Review.
15. Impact of Clinical Pathway on Quality of Care in Sickle Cell Patients.
Jayaram A, Nagel RW, Jasty R.
J Pediatr Hematol Oncol. 2010 Aug 3. [Epub ahead of print]
16. Deferasirox for managing transfusional iron overload in people with sickle cell disease.
Meerpohl JJ, Antes G, Rücker G, Fleeman N, Niemeyer C, Bassler D.
Cochrane Database Syst Rev. 2010 Aug 4;8:CD007477. Review.
17. A Family-based Randomized Controlled Trial of Pain Intervention for Adolescents With Sickle Cell Disease.
Barakat LP, Schwartz LA, Salamon KS, Radcliffe J.
J Pediatr Hematol Oncol. 2010 Aug 3. [Epub ahead of print]
18. Sickle cell disease in pregnancy.
Rogers DT, Molokie R.
Obstet Gynecol Clin North Am. 2010 Jun;37(2):223-37.
19. TRANSFUSION AND CHELATION PRACTICES IN SICKLE CELL DISEASE: A Regional Perspective.
Vichinsky CE, Ohene-Frempong K, Thein RC, Lopes de Castro Lobo C, Inati A, Thompson AA, Smith-Whitley OF, Kwiatkowski JL, Swerdlow PS, Porter JB, Marks PW.
Pediatr Hematol Oncol. 2010 Jul 30. [Epub ahead of print]
20. APPROACHES TO TRANSFUSION THERAPY AND IRON OVERLOAD IN PATIENTS WITH SICKLE CELL DISEASE: Results of an International Survey.
Vichinsky EP, Ohene-Frempong K.
Pediatr Hematol Oncol. 2010 Jul 30. [Epub ahead of print]
Ask The Experts
Question: I have sickle cell trait. Can I be a bone marrow donor?
Answer: Thank you for your question, and for volunteering to donate bone marrow!
Yes sickle trait is OK to be a bone marrow donor. Many of the people cured of sickle cell disease by bone marrow transplant had donors with sickle trait.
You should notify people at each step of the marrow donor process that you have sickle trait. There might be differences in the processing of the marrow that I don't know about.
-Lewis Hsu, MD, PhD
August 23-27 Bethesda, MD- NIH Annual Sickle Cell Disease Clinical
Research Meetings http://www.nhlbi.nih.gov/meetings/sicklecell-10/index.htm
September 21-24, 2010 Washington DC - SCDAA 38th Annual Convention Gaylord National Hotel & Conference Center Washington D.C. Sickle Cell
Disease Association of America, Inc.http://www.scdaaconvention.com/
This conference is designed for patients, parents, health care providers, administrators, educators, advocates, researchers and
community-based organizations. The focus is on strengthening the infrastructure of the sickle cell community through education and
action; fostering advocacy and collaborative networks with the best possible programs, practices and policies that result in prevention of
illness, improvement of the quality of life of affected persons, and finding a cure for Sickle Cell Disease.
Nashville, TN Town Hall Meeting: Title: Do Health Care Providers Care About Sickle Cell Disease?
Location: Corinthian Missionary Baptist Church, 819 33rd Avenue North, Nashville, TN 37209.
Time: 6:30-8:30 pm. Date: September 8, 2010For more information please call Meharry Sickle Cell Center 615.327.6763
5th Annual Sickle Cell Walk and Community Screening. Date: September 28, 2010 Time: 11am-1:00pm
Location: Campus of Historic Meharry Medical College, Nashville, TN. For more information call 615.327.6763
Palm Beach FL -Professional Development Seminar Spotlight on Sickle Cell September 30th from 9 a.m. to 5 p.m Double Tree Hotel Palm Beach Gardens Sickle Cell Foundation of Palm Beach County & Treasure Coast, Inc. 1600 North Australian Avenue West Palm Beach, Florida 33407
(561) 833-3113 www.sicklecellpalmbeach.org
October 4 Atlanta GA Sickle Cell Education Day 9 - 3 - Loudermilk Center: 40 Courtland Street, Atlanta, GA 30303 http://www.choa.org/default.aspx?id=2365
22 - 27 November 2010— Raipur (Chhattisgarh) India- Sickle Cell Disease International Organization in collaboration with Centre for
Genetic Diseases & Molecular Biology Department of Biochemistry, Pt. J.N.M. Medical College, Raipur (C.G.) INDIA are organizing the Fourth
International Congress 2010 Sickle Cell Disease International Organization http://4sccongress.co.in <http://4sccongress.co.in/>
Nov. 16 and 17 Bethesda, Maryland* The Herrick Symposium will be held on Nov. 16 and 17 (Tuesday and Wednesday) at the NIH campus in Bethesda, Maryland. Registration is now open at http://www.nhlbi.nih.gov/meetings/James-Herrick-Sicklecell/index.htm
Feb 23-25 , 2011 Hollywood FL* - 5th Annual Sickle Cell Disease Research and Educational Symposium and Annual National Scientific Meeting - Westin Diplomat Resort and Spa, Holly wood FL. Feb 21 - 22 Grant Writing Institute http://floridasickle.org/