May 31, 2010 -
PRLog -- While there is a lot of information published on Sickle Cell Disease, there is comparatively less on the person with the disease. Cure Every Cell - A Sickle Cell Support Group aims to correct this and be as complete a resource to the Sickle Cell Disease Patient as possible Did you know that African Americans are not the only people who get sickle cell disease? Sickle cell disease affects millions of people throughout the world and is particularly common among people whose ancestors come from sub-Saharan Africa, Spanish-speaking regions in the Western Hemisphere (South America, Cuba, and Central America), Saudi Arabia, India, and Mediterranean countries such as Turkey, Greece, and Italy. Because of this, hospitals in the United States screen all newborn babies for sickle cell disease Did you know that a woman with sickle cell disease can have a healthy pregnancy? Women with sickle cell disease can have a healthy pregnancy, but need to be extra careful to avoid problems during pregnancy that can affect their own health and the health of the unborn baby. The disease may become more severe and pain episodes may occur more frequently. There is a higher risk of preterm labor and of having a low-birthweight baby. However, with early prenatal care and careful monitoring throughout pregnancy, women with sickle cell disease can have a healthy pregnancy. During pregnancy, there is a test to find out if the unborn baby will have sickle cell disease, sickle cell trait, or neither one. The test is usually conducted after the second month of pregnancy. Women with sickle cell disease might want to see a genetic counselor to find information about the disease and the chances that sickle cell disease will be passed to the baby. Did you know that people with sickle cell disease need to have their vision checked more often that people who do not have sickle cell disease? Vision loss, including blindness, can occur when blood vessels in the eye become blocked with sickle cells and the retina (the thin layer of tissue inside the back of the eye) gets damaged. People with sickle cell disease should have their eyes checked every year to look for damage to the retina. If possible, this should be done by an eye doctor who specializes in diseases of the retina. If the retina is damaged, laser treatment often can prevent further vision loss. Did you know that there are different types of sickle cell disease? There are several different types of sickle cell disease. People who inherit two sickle cell genes, one from each parent, have a type of sickle cell disease called SS. This is commonly called "sickle cell anemia" and is usually the most severe form of the disease. People who inherit a sickle cell gene from one parent and a gene for another type of abnormal hemoglobin (hemoglobin is a protein that allows red blood cells to carry oxygen to all parts of the body) from the other parent, have a different type of sickle cell disease. Some types of sickle cell disease are very severe and some are milder. The disease affects each person differently People With Sickle Cell disease Need Better Services The relation between patients with sickle cell disease and hospital services is one of several major non-clinical dimensions shaping experiences of pain management and behavior for seeking health care. Experiences of hospital care show a range of interrelated themes, which are common to most participants across variables of sex, ethnicity, and hospital attended: mistrust of patients with sickle cell disease; stigmatisation;
excessive control (including both over- and undertreatment of pain); and neglect. Individuals respond to the challenge of negotiating care with various strategies. Patients with sickle cell disease who are frequently admitted to hospital may try to develop long term relationships with their careers, may become passive or aggressive in their interactions with health professionals, or may regularly attend different hospitals. Those individuals who usually manage their pain at home express a strong sense of self responsibility for their management of pain and advocate self education, assertiveness, and resistance as strategies towards hospital services. Conclusions:
The current organization and delivery of management of pain for sickle cell crisis discourage self reliance and encourage hospital dependence. Models of care should recognize the chronic nature of sickle cell disorders and prioritize patients´ involvement in their care. Endnotes Sickle Cell Disease (SCD) affects more people in the world than any other genetic disease. Globally, almost one-half million babies die from SCD each year J R Perry Cure Every Cell A Sickle Cell Support Group www.myspace.com/
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