Latest news with #SickleCellDiseaseAssociation
CBS News
20-06-2025
- Health
- CBS News
Families of those with sickle cell disease in Philadelphia area hope and advocate for a cure
Three-year-old Kaliph Eubanks is full of happy energy playing at the park in the Germantown section of Philadelphia. He also has sickle cell disease. Thursday marked World Sickle Cell Awareness Day, which focuses on supporting families and encouraging more research on the most common genetic disorder in the United States. "He looks normal one minute and then the next, something is wrong," Kaliph's mom, Antoinelle Whitmore, said. "You're always on the edge. You never know." Whitmore said her son has a mild case of the genetic disorder, which causes blood cells to become sickle-shaped. The cells then pile up and prevent oxygen delivery around the body, causing debilitating pain. Zemoria Brandon lost her husband to sickle cell disease. Now she works with Philadelphia's Sickle Cell Disease Association, which is raising awareness by lighting buildings in red this week. CBS News Philadelphia "It does affect people of African, Caribbean, Latino ancestry in the greatest numbers. But there are other groups … that are also affected in smaller percentages. So we just want to make sure that people know …it has a global impact," Brandon said. "The research is ongoing, and we're looking and hoping for a universal cure," Brandon said. Kaliph's mom said he's lucky so far to have only needed one blood transfusion. She lives in fear, but she's hopeful more awareness and research will lead to better treatments that are more accessible "I want him to reach for the stars. I want him to be his true authentic self," she said. "I want him to be the vibrant person he is now and not let anything hold him back." For people with severe cases of sickle cell disease, there are bone marrow transplants, and CHOP has developed a gene therapy.
Yahoo
16-05-2025
- Health
- Yahoo
Metro Detroit advocate for sickle cell patients worry about potential Trump cuts
The Brief Proposed cuts by the Trump Administration to medical assistance could hurt critical sickle cell patient care. The CEO and medical director of the Sickle Cell Disease Association are working to prevent the cuts. DETROIT (FOX 2) - A Metro Detroit doctor who is an advocate for the sickle cell community fears proposed cuts to Medicaid from the White House could potentially be deadly for those dealing with this disease. Audrieana Tabb thought her baby was healthy until she got a call from the medical staff. "She had the full sickle cell disease," she said. Dig deeper It's a blood disorder that can cause serious complications. Amara became so sick that two months later she was hospitalized. But when doctors learned Amara had sickle cell disease, Tabb said they immediately knew how to treat her, and everything started turning around. The family has Medicaid, but some fear that proposed cuts by the Trump Administration to medical assistance could hurt critical patient care needed to survive. What they're saying The CEO and medical director of the Sickle Cell Disease Association of America Michigan Chapter, Dr. Wanda Whitten-Shurney, is working to prevent the cuts. "The most important impact it's going to have is on sickle cell patient care," she said. This disease is often so debilitating it prevents the patient and their caregiver from working, forcing them to rely on Medicaid. "So if they don't have good insurance coverage, then what happens, they go to the ER, and they go to the inpatient setting—that's not good care and that's very expensive care, and what we're going to find is our warriors are going to be sicker and they're going to be literally dying because they can't get preventative care," Whitten-Shurney said. These patients are called 'Warriors' because they fight every day to survive. What's next The proposed cuts could also reduce access to gene therapies and medical research. So the doctor and advocate went to DC. "On May 7, we went to Hill Day and met with senators and representatives," Whitten-Shurney said. "Just to help them understand the real-life impact this is going to have." But the sickle cell community in Michigan hopes a state lawmaker can help their mission. "We're working with a champion, Amos O'Neil, who will introduce a bill that will codify the care that patients with sickle cell disease get who are on Medicaid, and it's so important that they get the appropriate care." It's a matter of life or death.
