Patients with Common Genetic Disorder Can Help Save Community Lives While Treating Their Condition at No Cost
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(HealthNewsDigest.com) – CHICAGO – According to America’s Blood Centers, every two seconds someone is in need of blood – and during the summer season the need is even more profound. In honor of National Hereditary Hemochromatosis (HH) Awareness Month in July, two of the nation’s largest independent blood centers LifeSource and Central Blood Bank are hoping to reach a unique group of people who can not only help address ongoing blood collection challenges, but also help themselves in the process.
HH is a genetic blood disorder that leads to the accumulation of iron in the liver, heart, pancreas, skin and gonads. It affects an estimated one million adults – or one in 200 – in the United States, primarily those of Northern European decent. HH is easily managed by regularly drawing blood, a process called phlebotomy, which causes the body’s iron levels to return to normal. LifeSource and Central Blood Bank are using the national awareness month to raise overall awareness of the condition to encourage diagnosis and to let current HH patients know that they are able to receive phlebotomies free of charge at select locations and help others in the process.
“The vast majority of these patients – and many physicians for that matter – don’t realize that with a doctor’s prescription, HH patients can receive regular phlebotomy treatments free of charge,” says Dr. Joseph Kiss, Medical Director for Central Blood Bank. “In the past, these individuals had their blood drawn and disposed of in their doctor’s office often incurring co-pays or doctor’s fees. We are urging them to visit one of our select donor centers to be treated at no cost and have the added benefit of knowing that their blood can help save people’s lives.”
Upon diagnosis, HH is easily managed through donation of a pint of blood on a regular basis which causes iron levels to normalize. HH patients need to rid their bodies of excess blood frequently until their iron levels have been returned to normal, and then every two to six months for the rest of the patient’s life.
In December 2005, Central Blood Bank implemented a variance from the Food and Drug Administration (FDA) for the collection and distribution of blood from patients with HH. In August 2008, LifeSource also implemented the same variance. Today, LifeSource and Central Blood Bank locations in the Chicago and Pittsburgh areas are not only providing a new treatment option for HH patients who are used to paying for phlebotomy treatment at a hospital or their physician, but they are increasing the blood supply.
“With the frequency of treatment, many HH patients have often struggled with and agonized over the fact that their blood was being disposed of and not able to be put to good use,” Kiss said. “After the FDA allowed the blood of HH patients to be collected and donated, we received a lot of positive feedback from the HH community.”
Increasing Awareness for HH
Thousands of people are living with HH and do not even know it. LifeSource and Central Blood Bank are highlighting National HH Awareness Month to promote awareness for the disease since the condition is often misdiagnosed or undiagnosed despite its high prevalence. Patients suffering from HH often first complain of symptoms that can be misinterpreted as other common ailments such as chronic fatigue, impotence, abdominal pain, muscle aches and joint pain (primarily in the fingers, knees, hips and ankles), increased pigmentation in the skin (bronze, ashen gray), depression, disorientation, memory problems, stomach swelling, nausea, among others.
Given the prevalence of the condition and hereditary nature, specialists suggest screening to detect HH for people who have a family member who has been diagnosed or who is experiencing symptoms related to HH before it causes problems. Although the majority of patients are diagnosed after age 40, the availability of genetic testing allows diagnosis of individuals at a younger age.
Males are five times more likely than females to be diagnosed with the disease due to menstruation, pregnancy, lactation, or lower iron intake. Symptoms usually appear between ages 40 and 60 when the iron build-up in the body has already reached toxic levels, causing irreparable damage to internal organs.
“After testing positive for the HFE mutation, I was quickly diagnosed with HH,” says patient Christopher Jansen. “My doctor wrote me a prescription for regular phlebotomy treatments which I began at LifeSource. With health care costs on the rise, I was surprised that I could receive these ongoing treatments for free. Almost a year later I continue to have phlebotomy done at LifeSource and I’m relieved to know my blood is going to those in need. I never would have believed that my having HH could actually help save other lives.”
About LifeSource
LifeSource, Chicagoland’s non-profit blood center, is the largest supplier of blood and blood products in Illinois, and one of the largest blood centers in the country. Established in 1987 through a merger of the Blood Center of Northern Illinois and the American Red Cross Blood Services-Mid-America Region, LifeSource is owned and operated by The Institute for Transfusion Medicine (ITxMSM).
LifeSource operates 22 conveniently-located community donor centers, two mobile unit-supported donor centers, and conducts an average of 10 mobile blood drives daily (or 100 mobile blood drives weekly). Serving patients in six northern Illinois counties, LifeSource provides a half million blood products annually to approximately 60 hospitals – including 10 Level 1 Trauma Centers – in meeting the need for patient transfusion therapy. For further information surrounding LifeSource, visit www.LifeSource.org.
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