All little hope endings3/2/2024 The treatment process is arduous, however, and it involves months of blood transfusions, followed by bone marrow extraction and chemotherapy. “It’s all the complications that it causes that really is frustrating,” he said, “and you don’t know what the next one’s going to be.” An arduous treatmentĬasgevy works by editing the DNA in a person’s bone marrow stem cells, which make the body’s red blood cells, so that they no longer take on a sickle shape. Ariguzo said he avoids work that is too strenuous, limits flying and doesn’t drink alcohol - which can all trigger a pain crisis. While Ariguzo tries not to let his disease affect him, he said it’s difficult to do so with the frequent onslaught of symptoms and hospitalizations. ![]() Obi Ariguzo, with friends and family, is often hospitalized because of his sickle cell disease. Ariguzo now works at the Texas Department of State Health Services, because the position “allows me to be at a desk and recuperate,” he added. “I couldn’t go back and walk all over set until I could actually move really freely without aid of a cane or crutches,” said Ariguzo, who lives in Austin, Texas. Because of the disease’s effect on his bones, he had to undergo four hip replacements - which made it difficult for him to continue his work related to visual effects in the film industry. ![]() Now, at 39, he experiences a pain crisis at least once a month. When he was a teenager, Ariguzo said, he got sick only once every four years. Like Smith Owens’, Obi Ariguzo’s sickle cell disease symptoms have worsened with age. Since she graduated, Smith Owens said, she hasn’t been able to work because she’s “always sick” and in extreme pain. I didn’t have time to make friends, because my time was spent in the hospital.” “I had no college experience at all, because my time in college consisted of being in the hospital for seven days, coming home, catching up and then going right back to the hospital,” said Smith Owens, who graduated last year with a degree in criminal justice. It wasn’t until she started college at Bowie State University in 2016 when “things got really, really bad,” she said. That has been the case for Kayla Smith Owens, 25, of Chesapeake Beach, Maryland, who started experiencing mild symptoms of sickle cell disease pain and fatigue until around age 12, during puberty. Kayla Smith Owens spent her 25th birthday in the hospital because of her sickle cell disease. The main symptoms of sickle cell disease are disruptive to people’s “quality of life and ability to just function as normal humans,” she said. While sickle cell disease is most known for causing severe pain, patients can experience stroke, heart disease, organ damage and a dangerous condition called acute chest syndrome caused by blockages in the lungs, Calhoun said. Cecelia Calhoun, a hematologist-oncologist and the medical director of the Adult Sickle Cell Program at Smilow Cancer Hospital at the Yale New Haven Health System in Connecticut. That shape can cause blood cells to clump together, blocking blood flow and depriving tissues of oxygen, said Dr. In people with sickle cell disease, red blood cells, which are normally disk-shaped, take on a crescent or sickle shape. ![]() ![]() “This is a potential life-transforming therapy,” Robertson said. But overall, we’re excited mainly because it’s another option,” said Derek Robertson, the president of the Maryland Sickle Cell Disease Association, whose two sons have sickle cell disease. “We are aware that there are a number of individuals who are still a little bit hesitant. It’s the first time a therapy that uses CRISPR, which was invented in 2009, has been approved, and whether it causes long-term side effects is unknown. Excitement about the treatment - which would eliminate the need for bone marrow transplants to cure the disease - is also colliding with some lingering feelings of distrust of the medical system among parts of the Black community.
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