Raising Public Awareness of Sickle Cell and Thalassaemia - New Outreach resources on the United Kingdom Government website and available for public use
The United Kingdom (UK) National Health Service Sickle Cell and Thalassaemia Screening Programme (NHSSCTSP) have published new resources as part of their strategy to improve public understanding of sickle cell disease, thalassaemia and genetic screening.
Education and outreach have been important for the NHSSCTSP because it was the first national genetic screening programme in the UK National Health Service. In 2009, the UK Sickle Cell Society was commissioned to deliver the NHSSCTSP public outreach on sickle cell. There was a lack of awareness of sickle cell and lots of stigma around the condition particularly in the high risk African and Caribbean communities most at risk of inheriting sickle cell so it was important to educate about sickle cell, testing and associated myths.
These resources now published include a good practice guide for people who commission, fund, deliver and evaluate outreach programmes, anoverview of the work delivered and the research underpinning it. The resources capture the learning from years of outreach work. They include a detailed guide that explains the learning, video clips from public events and interviews with service users and people who delivered the outreach. Resources can be accessed from: https://www.gov.uk/search?q=sickle+cell+outreach (For further information contact: iyamide.thomas@sicklecellsociety.org)
ODEP – Free resource – Work Accommodation Ideas for Sickle Cell Anemia athttps://askjan.org/media/sickle.htm A great resouce
Years ago, Tiffany was a school teacher. But after she became a mom, her 9 to 5 changed. “I was a stay at home mom,” Tiffany told 8News Anchor Ava-joye Burnett.
Both of Tiffany’s sons were born with sickle cell disease; the disorder can lead to serious health challenges and excruciating pain.
“You get a child who is crying, ‘Mom, Mom help me, I’m in pain,’ explains Tiffany, “and there is nothing that you can do because they are on morphine and the morphine pump. The doctor or the nurse can possible say, ‘I can’t give your child enough morphine because the pain is immeasurable.’”
The boys are now 12 and 8, trying to live normal lives with a tough disease. Tiffany also has a new career: working at Virginia Blood Services. There’s now a big push here in central Virginia to get more blood donations from African Americans.
“I think a lot of times, people, they don’t see where [their] blood goes, so it’s hard for them to really think and put their heads around that,” says Michelle Westbay, Marketing Director for Virginia Blood Services. “But in the end, you really are supporting lives.” Donations help with blood transfusions, and transfusions help to restore a patient’s body when the disease attacks. There are so many side effects—one of them being stroke—even for kids.
But another major part of the job at Virginia Blood Services is done in labs. Researchers are always looking for rare blood that will go only to patients who desperately need it. In some cases, it’s a patient’s only hope of survival.
Beth Johnson, of Virginia Blood Services, says they handle rare blood in a special way. “Once we find the rare blood, we stash it away so no body else can have it, except for us and we send it out to re patients who absolutely need it. Aside from working at Virginia Blood Services, Tiffany Dews is also continuing her work outside of the labs, within local communities. Her mission is to get more African Americans to donate blood that could help sickle cell patients—like her two sons.
“No one can see the damage it’s doing to their body as they get older,” Tiffany says. “A lot of times people give up, because no one understands the pain that they go though.”
NFL player Santonio Holmes knows the pain of sickle cell disease. He sees it in his 11-year-old son, T.J., as the boy struggles against the blood disorder that primarily affects people of African descent. A disease that causes intense pain and even life-threatening situations, it’s a tax on the body and the wallet as families often scramble to pay for expensive treatments. Holmes wants to change that. President of the III & Long Foundation, Holmes was in Washington, D.C., recently to meet with members of Congress and health care influencers, advocating for sickle cell research, awareness and treatment.
“As a parent of someone who has been diagnosed with sickle cell, I know how financially expensive and emotionally taxing the hospital visits, bills, treatment and medication can be,” said Holmes. “My goal is to raise awareness and help families that cannot afford the proper treatments by providing grants to organizations that assist these deserving families.”
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