Studying kinship has involved doing family, displaying family and ‘displaying family’ as a sensitising concept to understand modalities troublesome to display. Fathers at antenatal screening clinics for sickle cell are faced with pressures to produce multiple displays – of family, illness knowledge, the good father and the model citizen – often in the face of racialised identities. Such fathers emphasise the importance of hypervisibility in gendered spaces and hypervigilence, lest pressures to adopt the ‘right’ disposition have adverse consequences for themselves, partners or their children.The displays of fathers, as well as displays they decline, are orientated to repair of social relationships. Where displays are provoked by social relations – resisting racist or gender stereotypes, navigating citizenship uncertainties, negotiating work and family lives – displays become problematic. Family display becomes troubled where the preferred social relationships fathers seek to constitute are ones that are not readily accommodated within extant social relations.
Abstract source
While most people with SCT participate in sports without problems, there have been occasional serious complications and even deaths associated with dehydration, overheating, and other avoidable situations. Make sure you and your athletes are aware of the warning signs of exercise-related illness and know what to do if any of them experience signs or symptoms.
The conditions that increase the risk of exercise-related illness for athletes with SCT appear to be the same as those that increase the risk for athletes who do not have SCT. However, intense conditioning sessions appear to put athletes at higher risk for harm from competitions; though, scientific information specific to SCT is currently limited.
Abstract source
Participating in regular physical activity is one of the most important things you can do for your health. This is true for everyone, even those with Sickle Cell Trait (SCT). Athletes with SCT just have to be aware of the warning signs and complications of exercise-related illness, listen to their body, and take steps to protect themselves.
Below are answers to some commonly asked questions about SCT, participation in sports, exercise related illness, and what to do to help keep your athletes safe and healthy while engaging in physical activity.
Should people with SCT be allowed to play sports?
Absolutely! People with SCT can safely participate in all sports, provided they take a few general precautions, such as:
-Drinking enough water;
-Taking breaks when needed; and
-Not overdoing it, especially when starting a new exercise program.
Abstract source
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People with sickle cell trait (SCT) who experience an eye injury are more likely to develop glaucoma post-hyphema. This condition can lead to impaired vision and may even cause permanent eye damage. Therefore, if you have a patient with SCT who has suffered an eye injury, it is important that they are evaluated right away by an ophthalmologist who can closely monitor their care.
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People with SCT are at increased risk of glaucoma post-hyphema. Therefore, individuals with SCT and hyphema require urgent evaluation and close monitoring by an ophthalmologist.
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Trauma to the eye followed by eye pain, sensitivity to light, and vision changes, such as decreased vision or vision loss, may suggest that a hyphema has occurred. Sometimes hyphema can lead to glaucoma and damage to the optic nerve.
Abstract source
What Is the Living Well With Sickle Cell Disease: Self-Care Toolkit?
A toolkit is a collection of materials that can be used to help you to manage your health and keep track of important information regarding sickle cell disease (SCD). The Living Well With Sickle Cell Disease: Self-Care Toolkit has multiple uses. It is designed to help you and your caregivers with management of your disease, medical care, services, and health providers. The toolkit also will help communication between the many health providers and service providers that are involved with patient care.
Why Should I Use the Living Well With Sickle Cell Disease: Self-Care Toolkit?
Because many doctors are not familiar with SCD, it is very important for you to take an active role in managing your own care. To make important decisions, you need to know about SCD, understand your treatment options, and then make the best possible choices for your health. Using the tools provided in this toolkit will help you to monitor your health care and manage your disease.
Abstract source
At Children’s National, we understand that families affected by sickle cell disease have many questions about their child's treatment. We are dedicated to connecting you with information to help you understand how hydroxyurea can help children manage sickle cell disease.
What is hydroxyurea?
Hydroxyurea is a medicine that prevents pain that occurs from sickle cell disease. It comes in pill and liquid forms.
What are its benefits?
It helps reduce:
-Pain crisis
-Acute chest syndrome (pneumonia that occurs in sickle cell disease)
-Strokes
-The need for blood transfusions
-Hospitalizations
Abstract source
Sickle cell disease (SCD) is the world’s most common genetic disease, affecting approximately 100,000 people in the United States. As a group, people with SCD experience worse health outcomes compared to other diseases and have access to fewer health resources. This lack of equality is termed a health disparity.
Through a partnership with the Centers for Disease Control and Prevention’s Division of Blood Disorders, Tracking California and the Georgia Health Policy Center, the CDC Foundation is implementing the Sickle Cell Data Collection (SCDC) program to collect health information about people with SCD to study long-term trends in diagnosis, treatment and healthcare access. The SCDC program aims to use study findings to inform policy and health care changes that decrease health disparities for people with SCD.
The project is receiving funding support from Pfizer Inc., Bioverativ and Global Blood Therapeutics and is active in California and Georgia. Additional support is needed to expand the program to all of the United States to improve the disparate state of SCD.
Abstract source
Sickle cell disease, a rare hematological disease, results in misshapen red blood cells that can block the flow of blood through the body (called vaso-occlusive crises), causing intense pain, as well as problems such as stroke, acute chest syndrome, joint damage, kidney issues, occasionally even heart problems.
Sickle cell disease is a group of inherited red blood cell disorders that causes the cells to be crescent (“sickle”) rather than disk shaped. It is traced to abnormalities in hemoglobin, the protein that carries oxygen throughout the body.
Patients with the disorder are now living longer than they did in the past, thanks to a better understanding of how the disease works and earlier diagnosis and treatment. Creating a plan for managing symptoms of the disease is critical in improving patient outcome and requires close collaboration with healthcare providers. This collaboration is especially important when patients make the transition from seeing a pediatrician to seeing a doctor who treats adults.
Abstract source
Sickle cell disease is an illness of red blood cells. You are born with it, you get it from your parents. This means you cannot catch it from other people. Inside the red blood cells there is something called Haemoglobin or Hb.
There are many kinds of Hb, each has a letter or a name. Sickle cell Hb has the letter S. Each of your parents gives you one kind of Hb. For example, if you have one Hb S from Dad and one Hb S from Mum, then you have sickle cell disorder. Sickle cell trait means that a person is born with one unusual Hb which is the Hb S from one parent, and one usual Hb A from the other parent.
The sickle shaped red blood cells cannot travel through the tiny blood vessels easily; Oxygen also cannot get through to the tissues and organs of the body that need it. The sickle cell can get stuck in blood vessels and block the blood flow.
Abstract source
