ALTON – Amy Rivera, a nationally-recognized advocate, author, and speaker on Lymphedema and her life’s journey living with the disorder, will be the featured guest speaker during the OSF Lymphedema Education Meeting on Thursday, March 2.

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The meeting is scheduled to take place from 1:00 p.m.-2:00 p.m. at the OSF Saint Anthony’s Rehabilitation Services location in Alton Square Mall (228 Alton Square Mall, Alton).

Additional information about the meeting can be obtained by calling (618) 463-5171. To learn more about Ms. Rivera, please visit

Ms. Rivera was born with Primary Lymphedema, an incurable disorder that left her immensely disfigured. Her right leg was 200% bigger than her left leg. In trying to manage her disorder, she was misdiagnosed for over 30 years, leaving her disabled and isolated. Amy thought she was the only one who was suffering in silence. But after learning the truth about her condition, she realized that the Lymphedema community needed a voice.

She established the Ninjas Fighting Lymphedema Foundation (NFLF) to build relationships within the lymphedema community and to ensure that no one suffers alone. NFLF helps patients, schools, hospitals, non-profits, and communities big and small to better respond to the lymphedema epidemic.

Lymphedema is swelling in various areas of an individual’s body that happens when something affects a person’s lymphatic system. The lymphatic system collects excess fluid, proteins and toxins from the body’s cells and tissues and returns them to the bloodstream.

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When a person’s lymphatic system doesn’t work well, the body accumulates fluid and may begin to swell. The swelling typically affects an individual’s arms and legs, but it can affect other areas of the body, too. Lymphedema also increases a person’s risk of developing an infection where an individual has the condition.

This can happen after certain surgeries or because an individual has certain medical conditions or genetic conditions. A person may develop lymphedema spontaneously, meaning it happens for no known reason.

Lymphedema symptoms may be mild, causing minor swelling and discomfort. Sometimes, however, lymphedema may cause significant swelling that can be painful and cause skin issues such as infections and wounds. Healthcare providers can’t cure lymphedema, but they do have treatments to reduce lymphedema swelling and discomfort. There are also many things you can do to limit the impact lymphedema may have on your quality of life.

Amy's peers bullied her for having an “elephant leg,” and she learned to hide her disability by wearing skirts. In an attempt to recreate her identity as a teenager, she competed in the Miss Junior American Coed Pageant, and — to her shock — she won, only to become known as “the beauty queen with the big leg.” She went on to become a nurse, a wife, and a mother but felt depressed, isolated, and in pain for years as her leg swelled.

When Amy realized her calling in life was to help other disabled people, she realized she needed to help herself first. After finally receiving her lymphedema diagnosis, two surgeries, a divorce, many stressful dealings with health insurance companies, and ultimately changing her diet and exercise, Amy overcame the worst-known severity of lymphedema and now manages it with minimal maintenance.

She established a non-profit to support sufferers of lymphedema and became a voice for those with disabilities. This is the story of how Amy transformed her disability and dropped the skirt.

AboutOSF HealthCare Saint Anthony’s Health Center: A 49-bed Rural Health designated acute care hospital in Alton, Illinois, OSF Saint Anthony’s serves the residents of Madison, Jersey and Macoupin counties. It is home to OSF Moeller Cancer Center, which provides the latest diagnostic tools and treatment for patients in a relaxing environment. OSF Saint Anthony’s also provides 24-hour access to a physician-staffed emergency department, in addition to cardiovascular, neurology, pulmonology, surgical, rehabilitation services and more. OSF Saint Anthony’s is fully accredited by the Joint Commission for Healthcare Facilities, American College of Surgeons’ Commission on Cancer, American College of Radiology, CMS 4-Star Rating, American Heart Association, IDPH and TJC Primary Stroke Center. OSF Saint Anthony’s is part of OSF HealthCare – an integrated health system with 15 hospitals in Illinois and Michigan and robust Innovation and Digital Health divisions that provide access to specialty care and remote monitoring, helping people receive the care they need close to home. OSF HealthCare is operated by The Sisters of the Third Order of Saint Francis.

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