(FOX 2) — September is Sickle Cell Awareness Month, and the Michigan Chapter of the American Sickle Cell Disease Association is planning events to help raise awareness about the disease.
Stephanie Worth was unaware that both her and her son’s father were carriers of the sickle cell trait until his son Thomas White was diagnosed with a baby with sickle cell disease.
“As parents, I think you’ll go through a bit of grief when we get that first diagnosis,” she said.
The disease was brought to the United States during the slave trade and disproportionately affected the African-American community.
“I think there are about 100,000 people in the United States, as 1 in 12 African Americans have the characteristics of sickle cells and 1 in 400 have sickle cell disease.” Dr. Wanda Witten Sherney, Michigan Medical Director A branch of the Sickle Cell Association, founded in 1971 by his father, Dr. Charles Witten.
It is a hereditary disease that affects red blood cells and causes them to become malformed and sticky. They block blood vessels, causing intolerable pain and organ damage.
“All parts of your body need oxygen, so every part of your body is affected by sickle cell disease,” said Dr. Whitten Sherney. She is also the attending physician at the Sickle Cell Clinic at Children’s Hospital.
“We want people to stand up and be counted, and we can see how big this is really a public health problem,” she said.
All children are tested for sickle and sickle cell traits at birth. Sick children have to take medication immediately, which can be a very difficult journey with a short lifespan.
Stephanie’s son Thomas had been hospitalized 18 times at the age of 15 months. He was also staying at the hospital. He is now 23 and is preparing to graduate from a college in Ohio. However, there was close contact while I was away from school.
“Every day I think about the fact that if I didn’t pick him up, I would have lost him,” Worth said. She also said that the doctors at many hospitals were not fully aware of the sickle cell disease, which is a problem in many hospitals.
“One of the initiatives we started here is to focus on partnering with the hospital’s emergency department for proper care of patients with sickle cell disease,” Worth said.
It means understanding the types of pain experienced by patients with sickle cell disease. This is an ongoing effort to educate patients, parents and doctors and is currently raising awareness with the Sickle Cell Matters Virtual Walk.
This year’s annual walk is September 19th. Of course, thanks to COVID, that’s true, but there’s also a Sickle Slide dance move and we want them.
“The theme of our walk is like the movement of sickle cells, so you can move wherever you like,” said Dr. Whittenshireny.
She said there is a lot of excitement that scientists are working on gene therapy for sickle cells as new drugs become available in the last few years.
“The future is brighter than ever,” she said.
And parents like Worth have only hope, as more attention is focused on systemic racism and deep medical disparities.
“We’re really lucky to be in the midst of what the health system is saying about the Black Lives Matter movement. Well, we’re going to pay more attention to health injustice and health inequality. “Worth said. “For me, I have to believe in his hopeful future. I refuse to see it in any other way.”
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