SANTEE
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After Marian Diehl was diagnosed with the autoimmune disease scleroderma, her husband, Fletcher, told her she had two choices: give in to the little-known condition, or learn everything she could about it.
Together, the Santee couple chose the second option, and began immersing themselves in information.
Marian, 70, a retired account clerk, and Fletcher, also 70, a retired SDG&E gas serviceman, took over the local chapter of a national organization dedicated to curing the disease, opened a headquarters in their dining room and began volunteering up to 30 hours a week. They started talking about the disease every chance they could.
“Somebody's got to do it,” said Fletcher Diehl, who has served as president of the Greater San Diego chapter of the Scleroderma Foundation since 1999.
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Online: For more information about scleroderma, call the local chapter at (619) 448-6301 or go to scleroderma.org.
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On Sunday, Diehl's chapter put on its sixth 5K awareness walk and its first in conjunction with the Lupus Foundation of Southern California.
The event is the local chapter's biggest annual fundraiser, helping it contribute more than $100,000 to research. The local event has grown over the years, with the number of participants increasing from 60 the first year to about 360 this year.
The proceeds from such events have helped make the Scleroderma Foundation the largest nonprofit source of funds for researching the disease in the country, said Robert Riggs, chief development officer of the foundation, which is based in Danvers, Mass.
Much is not known about the disease that afflicts about 300,000 people nationwide.
Scleroderma is a connective tissue disease that affects women more often than men. The onset of symptoms is often between the ages of 25 and 55. It is not contagious, and one of the most visible symptoms is the hardening and thickening of skin. It can cause both external and internal problems, sometimes leading to kidney failure and heart problems.
Many who have it can't comb their own hair, Fletcher Diehl said.
“You're talking to one of the best hairdressers in Santee,” he said.
The disease forced Marian Diehl to retire sooner than she had planned about a decade ago. She was suffering from extreme fatigue and digestive problems when her doctor pinpointed the problem.
At times, she has needed round-the-clock care, he said. Fletcher Diehl does all the cooking and other housework.
Marian Diehl has lost most of her teeth and said she can't replace them because of her condition. Her breathing is strained by pulmonary fibrosis also caused by the scleroderma. She can't stand for very long, she said, and she had a blood transfusion during her simultaneous fight against leukemia a couple of years ago.
But through it, the pair have helped organize fundraisers, local monthly support group meetings for those suffering from the disease, and taught everyone they could about the condition.
Fletcher Diehl, who is known for his gregarious personality, was drawn into the work by what he calls the lack of direction he heard at local scleroderma support groups. He wanted to try to change that and he believes he has, with backing from others.
In 2004, he received the National Volunteer of the Year award from the Scleroderma Foundation.
While the disease continues to be fairly low-profile, the activism of volunteers like the Diehls and events like Sunday's 5K have helped raise awareness, Riggs said.
“More and more, I'm hearing people say, 'Oh yes, I've heard of that or I know somebody with that,' ” Riggs said. “This is a disease that touches very few people, but the 300,000, they each have a family . . . and friends.”
Michele Clock: (619) 593-4964; michele.clock@uniontrib.com
