September is Sickle Cell Awareness Month.
Sickle Cell Disease (SCD) is a blood disorder that impacts around 1,200 Wisconsin residents, and around 90% of Americans with SCD are Black.
On Wednesday, Milwaukee hosted its Annual Sickle Cell Summit with healthcare officials and community organizations.
Watch: Wisconsinites come together to fight Sickle Cell Disease.
The summit will include panels discussing the impacts of the disease, the importance of blood donation, and the impact the disease has in the Black community.
One of the panelists at the summit will be the Sickle Cell Warriors of Wisconsin. The executive director, Tokara Henry, has a personal connection with the disease. Over 10 years ago, Henry lost her cousin, Carlotta Thomas, to the disease. Her cousin’s illness spurred her to community work to fight the disease.
She says Wednesday’s event will provide education to the community, and she argues as education grows and medicine advances, people with SCD will live longer, healthier lives.
“What we see is, we see our families living longer lives, we see our families keeping hope, we see our families educating themselves, we see our families making better choices for themselves so that they too can defy those odds that have been put before them,” Henry said.
She says she’s hopeful for the future. One of those reasons is because of new medical advancements.
Officials at Children’s Wisconsin tell TMJ4 News that a recently FDA-approved gene therapy called CRISPR will be available in the state.
TMJ4 Lighthouse reporter Ryan Jenkins spoke with people in the community who have been impacted by SCD like Starda Kelly-Howard. She lived with the illness for 34 years, until last year when a bone marrow transplant changed her life.
She says she’s now doing things she never thought she would like riding bikes, going to the grocery store, and visiting the doctor much less.
She says the new treatment is just another option patients can take advantage of to pursue a healthy life.
“I didn't have many options. So, the bone marrow and the gene therapy - these options are crucial and wonderful for the sickle cell warriors because for so long it was nothing.”
The summit goes from 10 am-2 pm Wednesday and is located at City Hall.
TMJ4 will have more coverage of what's being done to fight Sickle Cell Disease Wednesday afternoon.
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