Steve Hunt’s untimely death shines light on rare, incurable disease –

In my wildest dreams, I never imagined I would be a widow at age 57. But here I am, alone and without my beloved husband Steve Hunt, former president, publisher and editor of the Victorville Daily Press. It all feels like a bad dream that I am going to wake up from at any minute.

How did this happen so fast? How did a man with robust health become fatally ill almost overnight with what doctors diagnosed as congestive heart failure (CHF)? Steve, 64, had no risk factors for this condition. He took great care of himself, too, always choosing nutritious foods and opting for natural supplements to cure his minor aches and pains rather than prescription meds.

About a month before Steve died, I came across some information about a disease called amyloidosis. Its extremely rare with only 4,500 cases diagnosed every year, according to the Amyloidosis Foundation.

Among the celebrities that suffer with amyloidosis are actor Michael York, NBA Hall of Famer Nate Tiny Archibald and Matt Millen, a four-time Super Bowl champion and broadcaster.

In a nutshell, the disease (which is not cancer) is caused by abnormal amyloid proteins which are produced in the bloodstream. The proteins build up in vital organs and essentially shut them down. So far, researchers have been unable to link a direct cause to the condition.

Symptoms include swelling of ankles and legs, fatigue and weakness, shortness of breath, irregular heartbeat and a number of other things.

Steve's symptoms were a near-perfect match to amyloidosis and suddenly, things began to make sense. But sadly, there is no cure for the condition and without treatment, the mortality rate is about one year from the onset of symptoms

The treatment plan for Steve included diuretics to get rid of the fluid buildup in his lungs, legs and feet, which is caused by the declining function of the heart. He also took potassium to keep his levels in check, as the diuretics often cause potassium to drop. His cardiologist opted to skip putting him on medication that would slow down CHF because the pills tend to lower your blood pressure and Steves BP was consistently running very low, sometimes registering a top number in the 70s.

Beyond low blood pressure, my husband also developed a host of other strange symptoms that seemed unrelated to CHF. He was losing fat and muscle mass rapidly, had a swollen tongue and was having trouble swallowing. Intermittently, red blotches appeared on his face and neck that looked like giant, broken blood vessels.

At that point, Steve could have undergone chemotherapy treatments or a stem cell transplant that likely would have prolonged his life.

By the time this came to our attention, his heart and other organs were damaged beyond repair. He also was much too weak to travel to one of the few hospitals in the country that treat the disease, such as the Mayo Clinic or Stanford University Medical Center.

A couple days before Steve died, he asked me to share his story hoping it would help others by bringing greater awareness about amyloidosis.

I pray that one day soon a cause will be identified, and a cure will be found for this dreadful malady.

Donations to the Amyloidosis Foundation can be made on Steves behalf at

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Steve Hunt's untimely death shines light on rare, incurable disease -

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