This Week in Sickle Cell News September 29th to the 6h of October

By Sean Marshall

One story coming out of Philadelphia was that a children s hospital has created a coping kit for the families of young children with sickle cell anemia.

According to a press release from The Children's Hospital of Philadelphia the hospital along with Meghan Marsac, Ph. D., a clinical psychologist working with the hospital, Have created the next coping tool for children and their families who have sickle cell disease. The coping mechanize is called “The Coping Kit.”

It was explained that the kit provides ways of fighting the factors that cause stress, which in her studies showed significant damage not only to the patient but their families as well. To fght off problems like stress the kit includes a stuffed toy named Cellie, coping cards, and a book for caregivers. It was explained that “children use Cellie's zippered mouth to store their coping cards where they can find over 100 tips for dealing with numerous disease-related stresses such as medical procedures, hospital visits and feelings of fear and uncertainty.”

According to a study that took place from 2013-2014 on the effectiveness of the kit it was reported that “Most families learned new information and/or skills from using the The Cellie Kit including new ideas for coping, normal reactions to their disease and its treatment, ways to initiate conversations, how to promote emotional expression, and how to help their children have fun.”

If you would like to read the original follow the link here:http://www.prnewswire.com/news-releases/the-childrens-hospital-of-philadelphia-develops-a-coping-kit-for-pediatric-sickle-cell-disease-patients-and-families-277814141.html#

Other international news comes from the United States were congress has finally put into motion a public service combat sickle cell disease. Representative Davis Danny of Kentucky introduced the “Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2014 and it has three priorities.

The three items were to “collect data on the prevalence and distribution of sickle cell disease, conduct sickle cell disease public health initiatives to improve access to care and health outcomes, and identify and evaluate strategies for prevention and treatment of sickle cell disease complications.”

This is big news the American government is moving forward and fighting sickle cell disease, they are actually bringing this up in congress. Bills are being passed to not just learn and fight the disease but to even improve access to medical equipment to combat sickle cell. This is a big step in the right direction and if the US government is taking action chances are the Canadian government will follow through. And if the worst case scenario occurs and Canada doesn’t follow people with sickle cell can at least travel to a close country for medical support.

Also issues with sickle cell disease have now been moved from “demonstration program from American Jobs Creation Act of 2004 to the Public Health Service Act.” This may all sound foolish but it proves that the disease is being taken seriously. It means Public Health is taking an interest rather then brush sickle cell aside it is being tackled head on.

All of this information has been provided by congresses website but if you would like to learn more you can find out the details here: https://www.congress.gov/bill/113th-congress/house-bill/5124


Like always if you have any questions comments or concerns email us at thesickleinme@gmail.com