Home2020July 2020 -

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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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Living in lockdown the past few months has been quite an experience. If you had asked me before the pandemic if I could stay indoors for 12 weeks and go out only for hospital appointments, I would have told you it was impossible. But here I am, well over 12 weeks later, and I’m still shielding. What an experience it has been. Being at home has given me the opportunity to identify my well-being needs...

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An umbilical cord blood transplant, coupled with a reduced intensity conditioning (RIC) regimen, can safely and effectively treat children with genetic disorders that include sickle cell disease (SCD) and thalassemia, data from a Phase 2 trial show. These findings are detailed in the study, “Reduced-intensity single-unit unrelated cord blood transplant with optional immune boost for nonmalignant disorders,” published in the journal Blood Advances. An umbilical cord blood transplant, known as UCBT, is a procedure in which blood isolated...

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The internet has been a blessing in many of our lives. It is an extremely handy tool, and a quick Google search can turn any of us into a mechanic, a Michelin chef, or a gardener. However, the internet can be a scary place when it comes to researching health.  Googling a set of seemingly mild symptoms can easily result in the belief that you have a range of conditions and need immediate medical attention....

Blood stem cell transplant from unrelated donors is a feasible strategy in people with sickle cell disease (SCD), with better outcomes when blood markers are matched between donor and recipient, a study suggests. The study, “The role of HLA matching in unrelated donor hematopoietic stem cell transplantation for sickle cell disease in Europe,” was published in the journal Bone Marrow Transplantation. Hematopoietic stem cell transplant (HSCT), or the transplant of blood cell progenitors, can be...