New Online Sickle Cell Community

Sickle cell disease patients and those who stand with them are invited to pre-register for free access to oneSCDvoice.com, an empowering online community launching later this month (December).

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.

http://www.prweb.com/releases/2017/11/prweb14939636.htm

http://www.prweb.com/releases/2017/11/prweb14939636.htmhttps://www.onescdvoice.com/

Children’s Book: ABOUT MY FRIEND JEN

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 AUTHOR
Award 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 facts
 REVIEWS
“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.

Increasing hydroxyurea keeps young sickle cell patients out of the hospital

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

Sickle Cell Awareness Month Activities

DC Diaper Bank

Donating to the DC Diaper Bank keeps bringing diapers to babies in need

The DC Diaper Bank provides diapers to social service organizations that are already helping families in need through comprehensive programs and services.  As of October 2015 there are 30 organizations in the Diaper Distribution Network and growing each month.  Collectively, the Distribution Network works to get an average of 100,000 diapers and other hygiene items to 3,200 families each month in Washington, DC, Maryland, and Virginia.

DC Diaper Bank has found that distributing diapers in this way ensures they reach those who need them most. It also provides partnering organizations a resource – diapers – they are not normally able to provide, increasing the services they can offer. By working with organizations that are already well established in the community and currently working with families in need, the DC Diaper Bank ensures that the diapers collected are distributed to infants and babies in the most efficient and timely manner. If you would like to learn more about becoming a Diaper Distribution Partner please contact info@dcdiaperbank.org

Programs

Living Well with Sickle Cell Conference

Sickle Cell Conferences and Events

The Sickle Cell Disease (SCD) Program at Children’s National invites you to the 7th Annual Family Education Symposium on “Living Well with Sickle Cell”.
Saturday, October 29, 2016 11:30 AM – 4:30 PM
Sheikh Zayed Campus for Advanced Children’s Medicine Children’s National Health System 111 Michigan Ave NW, 2nd Floor, Auditorium
Washington, DC, 20010
This year’s symposium will focus on helping patients and their families manage sickle cell disease while living life to the fullest.
http://childrensnational.org/news-and-events/event-calendar/community/7th-annual-family-education-symposium-updates-in-sickle-cell-disease