Four-time Super Bowl champion and former Penn State All-American gives difficult to diagnose rare disorder a platform


RARE DISEASE SPOTLIGHT GRAPHIC

There are more than 7,000 rare diseases but we are one Rare Disease Community. Regularly, Uplifting Athletes will put one rare disease center stage to give that disease and its community a chance to shine.

Rare Disease: Amyloidosis

Brief Description: Amyloidosis is a systemic rare disorder that is classified into several types. The different types of systemic amyloidosis are primary, secondary or familial (hereditary). Amyloidosis is usually a multi-system disease resulting in a wide spectrum of clinical presentations that can make diagnosis difficult because it mimics more common diseases. Amyloidosis has no cure but is treatable. It is caused by abnormal folding of proteins leading to fibril formation in one or more body organs, systems or soft tissues. Most diagnosed patients have more than one organ involved. Recent advances in therapy have rendered early and precise diagnosis critical if a patient is to fully benefit. The best estimates indicate there are approximately 4,000 new cases of amyloidosis annually in the United States, though actual annual numbers may be somewhat higher as a result of under-diagnosis. While the incidence is thought to be equal in males and females, about 60 percent of patients referred to amyloid centers are male. Primary amyloidosis has been reported in individuals as young as 20 years of age but is typically diagnosed between the ages of 50-65. Depending on the severity and type of amyloidosis, the most common treatment protocols involve medications, chemotherapy or a stem-cell transplant.

Rare Connection: Former Penn State All-American linebacker and four-time Super Bowl winner Matt Millen recently made his diagnosis with the rare disorder amyloidosis public. The 60-year-old Millen, a second-round draft pick in 1980 by the Oakland Raiders, will eventually need a heart transplant and has been going through weekly chemotherapy treatments since late last summer. For six years prior to his diagnosis Millen dealt with shortness of breath and chest pains and saw doctors regularly. His symptoms grew worse over time to the point where the it was difficult for Millen to walk more than 50 feet without getting winded. A long-time broadcaster and former NFL team executive, Millen initially brushed aside his diagnosis and was going to delay initial chemotherapy treatments. He had, after all, been living with this rare disorder for years and the 2017 football season was on the horizon. But when Millen, whose heart is operating at about 30 percent capacity, was told he could be dead before the end of football season, it drove home the reality of finally getting a diagnosis. Millen is still doing what he loves, broadcasting football games for the Big Ten Network and making fine cabinets out of the wood shop on his property in Bucks County, Pennsylvania. But as he waits to get listed for his heart transplant, Millen and his wife Pat are doing as much as they can to raise awareness for amyloidosis.

Patient Groups: Amyloidosis Foundation, Amyloidosis Support Groups, Amyloidosis Research Consortium, Genetic and Rare Diseases Information Center.

Getting Social: Twitter: @Amyloidosisfdn, @AmyloidosisSupp, @ORDR. Facebook: Amyloidosis Foundation, Amyloidosis Support Groups, Office of Rare Disease Research.

Learn More: There is no cure for amyloidosis. Chemotherapy and stem-cell treatments are the most common treatment protocols. There are currently more than 500 clinical trials for amyloidosis. To learn more about clinical trials go here. Some of the most well-respected resources inside the rare disease community include National Institute of Health (NIH), National Organization for Rare Disorders (NORD) and Global Genes.

 

 

 

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