WASHINGTON - Girl, 12, reflects progress made in sickle cell disease http://www.news-journalonline.com/news/local/flagler/2010/10/25/girl-12-reflects-progress-made-in-sickle-cell-disease.html
Sickle cell cure http://www.wsoctv.com/health/25476345/detail.html
Health watch Atlanta http://www.myfoxatlanta.com/dpp/news/health-watch-sickle-cell-anemia-092910
NIH Directors award to Ga Tech sickle cell research http://media-newswire.com/release_1128661.html
Vanderbilt And Meharry Establish Center For Excellence In Sickle Cell Disease http://www.medicalnewstoday.com/articles/203079.php
The NHLBI has just published a new Program Announcement (PA) entitled: "Sickle Cell Disease: Inflammation, Thrombosis and Vascular Dysfunction (R01)".
http://grants1.nih.gov/grants/guide/pa-files/PA-11-013.html
The contact for this PA is Andrei Kindzelski, MD, PhD, kindzelskial@nhlbi.nih.gov
NIH funds Center of Excellence for Molecular Hematology at Cincinnati Children's - http://www.eurekalert.org/pub_releases/2010-10/cchm-nfc100710.php Cincinnati Children's Hospital Medical Center has been named one of five national Centers of Excellence for Molecular Hematology to find new gene and cell therapies for inherited diseases affecting blood cells
Articles in the Medical Journals
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Furie KL, Kasner SE, Adams RJ, Albers GW, Bush RL, Fagan SC, Halperin JL, Johnston SC, Katzan I, Kernan WN, Mitchell PH, Ovbiagele B, Palesch YY, Sacco RL, Schwamm LH, Wassertheil-Smoller S, Turan TN, Wentworth D; on behalf of the American Heart Association Stroke Council, Council on Cardiovascular Nursing, Council on Clinical Cardiology, and Interdisciplinary Council on Quality of Care and Outcomes Research. |
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Stroke. 2010 Oct 21. [Epub ahead of print] |
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Baliga BS, Haynes J Jr, Obiako B, Mishra N. |
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Cell Mol Biol (Noisy-le-grand). 2010 Jun 1;56 Suppl:OL1290-8. |
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Serjeant GR. |
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Br J Haematol. 2010 Oct 19. doi: 10.1111/j.1365-2141.2010.08419.x. [Epub ahead of print] |
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McMahon L, Tamary H, Askin M, Adams-Graves P, Eberhardt RT, Sutton M, Wright EC, Castaneda SA, Faller DV, Perrine SP. |
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Br J Haematol. 2010 Oct 19. doi: 10.1111/j.1365-2141.2010.08395.x. [Epub ahead of print] |
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The lives of adults over 30 living with sickle cell disorder. |
Caird H, Camic PM, Thomas V. |
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Br J Health Psychol. 2010 Oct 14. [Epub ahead of print] |
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Silva CM, Giovani P, Viana MB. |
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Pediatr Blood Cancer. 2010 Oct 14. [Epub ahead of print] |
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Pain management in children and adolescents with sickle cell disease. |
Jerrell JM, Tripathi A, Stallworth JR. |
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Am J Hematol. 2010 Sep 16. [Epub ahead of print] No abstract available. |
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Wahl S, Vichinsky E. |
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F1000 Med Rep. 2010 Feb 11;2. pii: 10. |
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Maternal and perinatal outcomes amongst haemoglobinopathy carriers: a systematic review. |
Jans SM, de Jonge A, Lagro-Janssen AL. |
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Int J Clin Pract. 2010 Nov;64(12):1688-98. doi: 10.1111/j.1742-1241.2010.02451.x. |
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Hulbert ML, McKinstry RC, Lacey JL, Moran CJ, Panepinto JA, Thompson AA, Sarnaik SA, Woods GM, Casella JF, Inusa B, Howard J, Kirkham FJ, Anie KA, Mullin JE, Ichord R, Noetzel M, Yan Y, Rodeghier M, Debaun MR. |
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Blood. 2010 Oct 12. [Epub ahead of print] |
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Belisário AR, Martins ML, Brito AM, Rodrigues CV, Silva CM, Viana MB. |
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Acta Haematol. 2010 Oct 12;124(3):162-170. [Epub ahead of print] |
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Walter Clement Noel—first patient described with sickle cell disease. |
Steensma DP, Kyle RA, Shampo MA. |
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Mayo Clin Proc. 2010 Oct;85(10):e74-5. No abstract available. |
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Phytomedicines (medicines derived from plants) for sickle cell disease. |
Oniyangi O, Cohall DH. |
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Cochrane Database Syst Rev. 2010 Oct 6;10:CD004448. |
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Gutsaeva DR, Parkerson JB, Yerigenahally SD, Kurz JC, Schaub RG, Ikuta T, Head CA. |
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Blood. 2010 Oct 6. [Epub ahead of print] |
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Coagulation responses after a submaximal exercise in sickle cell trait carriers. |
Beltan E, Chalabi T, Tripette J, Chout R, Connes P. |
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Thromb Res. 2010 Oct 4. [Epub ahead of print] No abstract available. |
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Vij R, Machado RF. |
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Chest. 2010 Oct;138(4):973-83. |
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Clinical complications in severe pediatric sickle cell disease and the impact of hydroxyurea. |
Tripathi A, Jerrell JM, Stallworth JR. |
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Pediatr Blood Cancer. 2010 Oct 4. [Epub ahead of print] |
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El Alfy M, Sari TT, Lee CL, Tricta F, El-Beshlawy A. |
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J Pediatr Hematol Oncol. 2010 Oct 1. [Epub ahead of print] |
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Tourniquet Use and Sickle Cell Hemoglobinopathy: How Should We Proceed? |
Fisher B, Roberts CS. |
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South Med J. 2010 Sep 30. [Epub ahead of print] |
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A survey of perioperative management of sickle cell disease in North America. |
Firth PG, McMillan KN, Haberkern CM, Yaster M, Bender MA, Goodwin SR. |
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Paediatr Anaesth. 2010 Sep 29. doi: 10.1111/j.1460-9592.2010.03415.x. [Epub ahead of print] |
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Minniti CP, Eckman J, Sebastiani P, Steinberg MH, Ballas SK. |
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Am J Hematol. 2010 Oct;85(10):831-3. |
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Ballas SK, Bauserman RL, McCarthy WF, Castro OL, Smith WR, Waclawiw MA; the Investigators of the Multicenter Study of Hydroxyurea in Sickle Cell Anemia. |
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J Pain Symptom Manage. 2010 Sep 21. [Epub ahead of print] |
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23. |
Beneficial effects of nitric oxide breathing in adult patients with sickle cell crisis. Head CA, Swerdlow P, McDade WA, Joshi RM, Ikuta T, Cooper ML, Eckman JR. Am J Hematol. 2010 Oct;85(10):800-2. |
Ask the Experts
Please I need some information regarding being absent from school and school work and how not to fall behind. my son is 5 yrs old with SS. I need some information about 504 plans, home bound and all. Thanks.
Thank you for your question. Most children with sickle cell do not miss a lot of school, but it is good to meet with the school early in the year to make plans just in case.
1. A little bit of information on sickle cell for the principal, teachers, and other staff can go a long way toward making the school supportive for the child with sickle cell disease. One of the best guides I have seen is from Children's Mercy Hosp in Kansas City Pages 16-18 are very relevant to your question, especially the sample 504 plan on page 17. http://www.dhss.mo.gov/SickleCell/EducatorsGuide.pdf The New Jersey Dept of Health website is quite good also http://www.newjersey.gov/health/fhs/sicklecell/index.shtml
Atlanta CHOA guides at http://www.choa.org/default.aspx?id=411
St Jude’s Guide http://www.stjude.org/SJFile/Educators%20Guide%20to%20SCD.pdf
2. Most sickle cell centers feel that keeping the child in school whenever possible is better for overall development. I recommend prolonged homebound instruction only for exceptional situations for most children with sickle cell disease. Most children would do better, I think, with a 504 plan or IEP.
3. Not falling behind in school is obviously easier for a 5-yr old level than for high school or beyond. Preventing pain & hospitalization with good hydration, avoiding extremes of heat or cold, and avoiding exhaustion are all important. If pain or acute chest syndrome become very frequent, you can talk to your hematologist about possible hydroxyurea therapy to reduce the frequent events.
Sincerely,
-Lewis Hsu, MD, PhD
Pediatric Hematologist
Website Review:
Events
Say It Loud! Conversations on Sickle Cell Disease.Teleconference Thursday, December 30, 2010 Choose a time best for you: 12:30 p.m. to 12:55 p.m. EST or 6:30 p.m. to 6:55 p.m. EST
You’re invited to join in by dialing 1 712 432-0080 Passcode 490765#
Access available as long as lines are open. Host: Mary Bentley LaMar, Executive Director The Sickle Cell Association of New Jersey, Inc., (SCANJ) Topic: Sickle Cell Trait? Get it Straight!
November 13 Boston MA, Greater Boston Sickle Disease Association Scholarship & Community Awards Gala on Saturday, November 13, 2010 time: 7 pm - 10 pm @ Lombardo's Banquet Center , 6 Billings Street, Randolph , MA. http://www.cscsginc.org
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
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/