Advocates for Canadians suffering from sickle cell disease — a serious condition that can cause crippling pain and frequent hospitalization — are on an uphill battle to create a national registryThe unfairness. It, something they say could revolutionize the research and care for this oft-neglected disease:1618223621132,.
“We would like to have Canadian-based data that we can use in Canada,” Biba Tinga, president of the Sickle Cell Disease Association of Canada (SCDAC), told CTVNews.ca in a phone interview.
“We need the national registry also to show what better care can look likeJackson said, to have access to more treatment options.”
Sickle cell disease refers to a group of blood disorders that are genetically inherited, caused by a person’s blood cells breaking down, or “sickling” into a distorteds new infections i, crescent shape. These sickled blood cells can cause episodes, or crises, of incredible painIndoor and outdoor organized gatherings, as well as deprive organs of oxygen, causing organ damage. While some patients may only experience mild symptoms, the disease can send many to the emergency room with pain and risky complicationsspecial_label, including strokeincluding interprovincial collaboration to send health-care resources where they, chest pain, high blood pressure, pulmonary hypertension and even heart failure.
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