Promoted as “A Sickle Cell Community Tailored to You,” oneSCDvoice will deliver trustworthy information to help people affected by sickle cell disease know more about it, learn of promising new treatments being tested in clinical trials (and how to access those new treatments as a clinical trial participant), more easily tap into needed support, and above all improve the quality of their lives.
oneSCDvoice.com is the creation of sickle cell healthcare providers, advocacy leaders, pharmaceutical manufacturer Pfizer, Inc. and health technology company rareLife solutions.
This collaborative digital education platform provides professionally vetted links to credible information about SCD, about lifestyle issues related to the disease, and about how to get more and better help coping with this devastating genetic condition.
‘Parent’s Stories’ is a new report that has been launched containing experiences from parents of African, Caribbean, Middle-Eastern, Asian and Mediterranean origin who have been through the United Kingdom’s National Health Service (NHS) Sickle Cell and Thalassemia Screening Program and who were at increased risk of having a baby with either sickle cell or Thalassemia, two serious genetically inherited blood conditions. The report stems from a successful collaborative project between the Screening Program and two patient representative organizations – the Sickle Cell Society (SCS) and United Kingdom Thalassemia Society (UKTS). The project aimed to determine any barriers affecting the timeliness of the offer of screening and prenatal diagnosis (PND) to couples and recommend ways of improving screening services. As part of the project, ‘at –risk’ couples who each carried a gene for sickle cell or Thalassemia who had been through antenatal screening within the last five years were interviewed and their shared stories made up the rich evidence contained in the ‘Parent Stories’.Some Key Points that emerged:
- Most women had told their doctor (GP) about their pregnancy early on and already knew their sickle cell or Thalassemia status before becoming pregnant.
- Parents said some healthcare professionals (including some GPs) did not have much knowledge of the conditions or the screening pathway and did not recognize the need for prompt referral to counseling and PND. Parents wanted prompt referral or ‘self-referral’ to specialist nurses and midwives at the Sickle Cell and Thalassemia Centers as from their experience this speed things up.
- Parents also wanted to meet individuals who were living successfully with sickle cell or Thalassemia and to be put in touch with patient organizations who could find someone in the community to support them.What Happens Next?These parent stories are an invaluable resource for people commissioning services and working in the Screening Program and have contributed to a report with recommendations for community organizations, the public and screening service providers.The full ‘Parent Stories’ report is available at:For hard copies please email: email@example.com
ABOUT MY FRIEND JEN“There is nothing that my friend Jen can’t do, but on the inside, she’s a little different to me and you.”As Jen’s friend tells us a story, you will learn a few simple tips on how to stay well with Sickle Cell.A Little Different is the first in the series of My Friend Jen books. The series of rhyming children’s books aims to create better understanding and awareness of the blood disorder sickle cell anemia in a fun and informative way.ABOUT THE AUTHORAward winning author, and publisher Jenica Leah is one of the UK’s leading sickle cell ambassadors. Living with sickle cell anemia herself, she has battled with the many complications that come with the condition and has never let this hold her back.After undergoing total hip replacement surgery at the age of 25, Jenica Leah vowed to help others living with the sickle cell condition by being more open about her health and her journey, and by doing more to create awareness and get people talking about it.The My Friend Jen children’s book series is just one of the ways in which she does this.UNIQUE SELLING POINTS
- Fun and easy to read story on an educational topic, encouraging children to learn about one of the most common genetic disorders in the world.
- Story written from a real-life perspective with passion and the drive to inspire readers.
- The simple yet factual information in the story makes it a great teaching tool.
- It’s rhyming and rhythmic writing style makes it easy to read and remember key factsREVIEWS“An excellent book for young children affected by sickle cell disorders.” – Professor Dame Elizabeth N. Anionwu“A great resource for families and health professional: encourages good self-care & education of all around to see the person beyond the difference.” – Dr C J Wright, FRCP, FRCPath“This book is well written particularly for young patients to understand more about their condition. It is indeed a useful reference and my firm view is that it should be easily accessible to all.” – Dr S Pancham, Specialist in Hematology.
St. Jude Children’s Research Hospital investigators have shown that using the drug hydroxyurea to boost average fetal hemoglobin levels above 20 percent in children and teenagers with sickle cell anemia was associated with at least a two-fold reduction in hospitalization for any reason.Results of the federally funded HUSTLE study—Hydroxyurea Study of Long-Term Effects—appeared online this week in the American Journal of Hematology.The findings should help settle the debate about how to optimize hydroxyurea for treatment of sickle cell disease in young people. Rather than calculating a standard dose of hydroxyurea based on patients’ weight, researchers used a dose-escalation approach to determine the maximum tolerated dose for each of the 230 St. Jude patients enrolled in the study.“Our analysis showed that using this approach, hospitalizations for the average patient fell to less than one every couple of years rather than four to six annually,” said lead author Jeremie Estepp, M.D., an assistant member of the St. Jude Department of Hematology. “This frees children from the fevers, pain and other symptoms of this disease and gives them and their families more chances to enjoy childhood and adolescence.”https://www.stjude.org/media-resources/news-releases/2017-medicine-science-news/higher-hydroxyurea-dose-improves-outcomes-for-young-sickle-cell-patients.html
During Sickle Cell Awareness Month make a pledge to start a conversation with co-workers, neighbors and friends about the importance of knowing their sickle cell status.
Statistics on Sickle Cell Disease continue to rise because no one IS willing to start a conversation. How many people do you know have talked about starting a family, but never considered the importance of knowing their Sickle Cell status?
Many states now require children to be screened at birth for Sickle Cell disease but as adults, no one remembers or considers the importance of knowing if they carry the Sickle Cell trait?
If both the mother and father have the Sickle Cell trait, they run the risk of having a child born with Sickle Cell. This is not to put blame on anyone, but rather encourage our community to get educated about SCD.
The Jewish community lowered statistics on Tay-Sachs disease by 95% through vigilant screening programs and a commitment to educate people. Their plan enlisted the support and infrastructure of the Jewish community to host screenings at synagogues and community centers. The support of Rabbi’s was also a big factor in the success of their efforts.
It is our goal to understand why African American and Hispanic communities are unwilling to do the same. How can the Sickle Cell Community obtain support from churches and ministers, civic organizations and the medical community to get everyone to check their Sickle Cell status?
It is so important to start conversations about Sickle Cell disease so that future generations will never have to worry about ” breaking the Cycle.”
Tell us what you think. Read the article about how the Jewish community beat Tay-Sachs disease and let us know if you think we can do the same for Sickle Cell Disease ?
HOWARD UNIVERSITY CENTER FOR SICKLE CELL DISEASE INVITE YOU TO
JOIN US AS WE OBSERVE SICKLE CELL AWARENESS MONTHHoward University Initiative for A Cure (#CURESICKLENOW)CALENDAR OF EVENTSFUNDRAISERFRIDAY, SEPTEMBER 1, 2017
6:00 PM – 8:00 PM
SICKLE CELL TEA SOCIAL – Live music & DJ
CALABASH TEAHOUSE & CAFE
1847 7th Street, N.W. Washington, DC
Registration Through Eventbrite Required – RSVP by August 29, 2017
Food available for purchase**All Proceeds to benefit Howard University Center for Sickle Cell Disease Outreach Programs*FRIDAY, SEPTEMBER 8, 2017
6:00 PM – 7:30 PM
SICKLE CELL AWARENESS EVENT AND CANDLELIGHT VIGIL.”
Howard University Hospital – Plaza
2041 Georgia Ave., NW. Washington, DC
***Allow us to honor your loved ones that have transitioned. Please send their names to be memorialized and read during the Candlelight Ceremony***SUNDAY, SEPTEMBER 10, 2017
SICKLE CELL RECOGNITION SUNDAY
HOWARD UNIVERSITY RANKIN CHAPEL**SICKLE CELL TRAIT TESTING WILL BE OFFERED AFTER SERVICE**
FOR MORE INFORMATION SEND EMAIL TO: firstname.lastname@example.org
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