Advocates on Steps of Congress 2013
Please leave this field empty

Winter - 2016 Angie and Al Crowl

On May 4, 1973, Angie DiFebo married Alvin Crowl. "For better or for worse, in sickness and in health," she said. Little did she know that those vows would be tested years later.

On May 4, 1973, Angie DiFebo married Alvin Crowl. “For better or for worse, in sickness and in health,” she said. Little did she know that those vows would be tested years later.

 For Angie, there was no doubt that Alvin was the one.

 “I knew it when I first met him,” she recalls. “There was just something about him. He is my one in a million.”

 That “something” must have been Alvin’s strong will and positive attitude. Their journey started when Alvin was diagnosed with testicular cancer in 1984.

 “Our son, Chris, was only 6 years old, and at that time we wanted to have more children,” Angie says. “We made it through okay, but Alvin still has some lingering effects from the radiation, including scars on his back. He also started having bouts with his stomach after the treatments. We still aren’t sure if the radiation damaged his intestines.”

 "I have days when my stomach doesn't feel right, so I won't eat,” said Alvin. “When I really have it bad, I can't eat for a week or two weeks. I just throw everything up.”

 Roughly ten years after his cancer diagnosis, Alvin started experiencing issues with his hands. At the time, he was working on airplane engines for the Delaware Air National Guard. He thought the color change in his hands, from pink to white and blue in the winter, was the result of working with jet fuel and other chemicals. Alvin later found out the discoloration was the result of Raynaud Phenomenon. Raynaud’s occurs in about 90 percent of scleroderma patients. In 1994, Alvin’s rheumatologist diagnosed him with scleroderma.

 “They told us not to go on the internet and read about it because it was scary,” Angie remembers. “Of course, I did. There wasn’t a lot of information, but we did find the Foundation’s website.”

Angie and Al followed up with the Foundation and requested more information and brochures. The Crowl family eventually became members of the Foundation and decided to attend a support group in 2001.

 “We attended one meeting. It was scary because people were in the advanced stages of the disease,” said Angie. “We were wondering when that would happen to Al because at that time his involvement hadn’t progressed that much. I’ll never forget that. We didn’t know where to turn.  Any information they had, they gave us.”

  They also embarked on their own research project.

 “We found The Scleroderma Book: A Guide for Patients and Families by Dr. Maureen Mayes at the local library. It answered so many questions about his body and the changes that were happening.”

 As Al’s skin thickened, he lost some mobility. It became particularly difficult for him to bend over. He also dealt with digital ulcers and hard-to-heal wounds, including one that kept him from sitting for more than half a year. It was that particular wound that was the hardest for him to deal with.

 “Al went to night school for twenty years to become an engineer. He finally got his degree in 1998. I was so proud of him,” said Angie. “He had had his eye on this particular high-performance muscle car for a long time. It was a 1972 wilderness green GTO. So I surprised him with it for his graduation.”

 After reconnecting with some old friends, the Crowl family came up with a brilliant idea for raising money and awareness for the Foundation. What better way to honor Al than with a car show?

 The first ever Cruise for a Cure took place in 2012 and has continued to grow.

 “We started with a small committee of eight people and a lot of helpers,” Angie said with a smile. “The event is supported by friends and patients in our community and by businesses that we have connected with over the years. Our support system is growing. Our friends even come to support group meetings to support us. We are so thankful.”

 In addition to hosting the annual car show, Angie serves as the Wilmington, Delaware support group leader and is on the board of the Scleroderma Foundation’s Delaware Valley Chapter (SFDV).

 “Angie has been a valuable member of our community,” said Fee Sepahi, executive director, SFDV. “We can't thank her enough, as that particular event has continued to raise more and more revenue and awareness every year.”

Life certainly changed for the Crowl family. Instead of enjoying their beach house on the Elk River in Maryland and line dancing with their friends, their calendar was full of doctors appointments. But you never heard them complain.

 “Al never balked when I wanted to call the doctor. He never complained,” recalls Angie.  “Not even when he couldn’t sit down for months.”

 After a long and courageous, Al lost his battle to scleroderma this summer. 

 “It’s amazing how he stood up to all his challenges,” Angie says. “I can’t complain. He fought all the way to the end.”

The dedication, determination and hope that the Crowl family showed over the years is an inspiration for other families dealing with scleroderma.


All active news articles