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Have you ever informed somebody of your diagnosis and found their response to be a little annoying? I often have. I try to extend grace in such situations because usually people don’t know what to say and, as such, speak without considering the ramifications. With that in mind, here are some things to avoid saying to sickle cell patients. ‘You’re lazy.’ Sickle cell patients are at risk of acute and chronic fatigue. There are a...

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The National Heart, Lung, and Blood Institute (NHLBI) awarded nearly $1 million to Athena Starlard-Davenport, a professor at the University of Tennessee Health Science Center (UTHSC), to support work into fetal hemoglobin as a potential way of treating sickle cell disease (SCD). “For the past 100 years, only four drugs have been approved by the FDA for the treatment of sickle cell disease,” Starlard-Davenport, PhD, said in a press release. “Those patients need more treatment options depending...

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In the U.K., approximately 15,000 people have sickle cell disorder and approximately 240,000 have the sickle cell trait. Despite these high numbers, I only meet someone who knows about sickle cell once in a blue moon. One time I met a guy with sickle cell at my friend’s church. Speaking to him brought me so much relief. I was reminded that I’m not the only one going through this. I could spend days trying to describe...

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With a stem cell transplant (SCT) being a potentially curative treatment for sickle cell disease (SCD), a blood disorder that disproportionately affects Blacks, a donor registry is encouraging more African-Americans to join its ranks. Be The Match, the world’s largest and most diverse marrow registry, has opened Be The Match Atlanta to support greater registry participation by Blacks and African-Americans in that metropolitan area. “We are asking for Black Atlantans … to help those in our community who are...

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Emotional distress affected nearly half of the parents caring for adolescents with sickle cell disease in a recent study, with greater numbers of hospital visits and other life disruptions predicting higher stress levels. Psychosocial support and education to help caregivers be more resilient and better able to cope could improve emotional well-being and may limit the need for repeated hospital trips, its researchers wrote. The study, “Emotional distress among parent caregivers of adolescents with sickle cell...

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During this period I have heard a lot of people complain about unwanted weight gain, but it is the opposite in my case. I have been losing a lot of weight and it took me a while to notice. When I think about all the possible explanations, my weight loss makes perfect sense. My lifestyle has changed pretty drastically since I started shielding. I have new routines that have had a knock-on effect on my...

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A European Medicines Agency (EMA) committee has adopted a positive opinion on Novartis‘s Adakveo (crizanlizumab) for the prevention of vaso-occlusive crises (VOCs) in people with sickle cell disease (SCD). The EMA’s Committee for Medicinal Products for Human Use (CHMP) recommended the conditional approval of Adakveo, alone or in combination with hydroxyurea (hydroxycarbamide), to prevent VOCs, or pain crises, in individuals 16 and older. “The positive CHMP opinion for Adakveo underscores the potential of this new medicine...

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Most people with sickle cell disease (SCD) in the U.S. are satisfied with their primary care practitioners, but less so with emergency care given at a hospital to manage severe pain, according to a survey of more than 400 teenage and adult patients. How a person expects to be treated weighs on decisions to access care, responses showed, with more than half of these patients saying they delayed or avoided needed emergency care in the...

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I recently spoke to a mother who gave birth to a child with sickle cell. The diagnosis was not expected at all. The news completely rocked her world. That’s understandable, as sickle cell results in huge lifestyle changes that a parent needs to accommodate. I imagine it is the same for almost all parents who are expecting or have a child with sickle cell. While the new addition to your family brings you so much...

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Cannabis could be a safe and potentially effective way of easing chronic pain in people with sickle cell disease (SCD), according to results of a small clinical trial. Although the benefits in pain were not statistically significant compared to a placebo, pain interference in mood decreased over the five-day treatment period in participants on cannabis. Although differences in perceived pain levels were not statistically significant between patients inhaling cannabis or a placebo for five days,...

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