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Dealing with scleroderma

Halfway man lives with disease and others' curiosity

Halfway man lives with disease and others' curiosity

October 16, 2006|by JULIE E. GREENE

HALFWAY - Complete strangers come up to Ronnie Hardy in the grocery store and ask him, "What's wrong with you?" or "Do you have the measles?"

Once, a doctor - without looking up to see Hardy's face - went to shake Hardy's hand and when he looked up and saw the red spots on the Halfway man's face, the doctor pulled away, Hardy recalls.

The red spots are not from measles, and Hardy is not contagious.

Hardy says he answers people's questions about his appearance, but he doesn't like to, because he feels awkward.

The red spots are caused by abnormal blood vessel formations, one of the manifestations of diffuse scleroderma, an uncommon chronic connective tissue disease that has no known cause or cure, says Dr. Steven Klein, a rheumatologist with Rheumatology Consultants in Hagerstown. Scleroderma is believed to be an immune system disorder, Klein says.

The disease also had led to fluid retention, causing Hardy's weight to fluctuate from 188 pounds one day to 204 pounds the next, Hardy says.

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Scleroderma can range from mild to life-threatening with some people needing organ transplants, according to Klein and the Scleroderma Foundation's Web site.

The disease can thicken and harden vital organs, affecting their ability to function.

About 300,000 people in the U.S. are estimated to have scleroderma, according to the foundation, including 80,000 to 100,000 with the systemic, or diffuse, form, which can affect the whole body, as opposed to the localized form.

The disease tends to occur more in women with its most frequent onset between the ages of 25 to 55, the foundation's Web site states.

Hardy, 41, first noticed a problem about 17 years ago when he developed sores on his fingers. They were ulcers. Then the skin on his fingers and legs tightened.

After two months of this, he saw an orthopedic doctor, thinking it might be related to carpal tunnel surgery he'd had on his left wrist. It wasn't and the doctor referred him to a rheumatologist.

Told it was scleroderma, Hardy says, "I didn't know what to say. I didn't know how bad it would get."

Hardy's pain was a 9 on a scale of 1 to 10 the day a reporter visited his home. The level of pain can vary.

As years passed, he got more red spots, the skin tightening spread and the disease began affecting his internal organs.

Hardy needs to drink liquids with his food to help him swallow, takes medicine for acid reflux and has chronic diarrhea, says Hardy.

He cannot walk up the stairs and come right back down without resting because he has difficulty catching his breath.

He can easily feel cold and his hands and feet are often blue because the scleroderma has slowed his blood circulation.

He has trouble gripping things that lie on a flat surface because his hand won't expand to a flat position.

With no cure for scleroderma, medicines treat the symptoms and address the disease's damage, Klein says.

"I just live from day to day. I don't make plans ahead of time," says Hardy. He doesn't know how he'll feel on a given day.

Hardy and his wife, Joanna, are sharing information about Ronnie Hardy's condition so people know why he looks the way he does and to spread word about scleroderma.

The couple also is hoping the community will help them by making a financial donation to The Ronald Hardy Fund at Bulldog Federal Credit Union.

While their insurance has covered most of the medical expenses, the couple travels to Johns Hopkins Bayview Medical Center or Johns Hopkins Outpatient Center in Baltimore at least once a week for Hardy's appointments with various doctors.

Their 1990 Honda Accord was becoming unreliable so they bought a used 2000 Ford Windstar in July that ended up needing transmission work. They owe $14,000 on the Windstar, with $350 monthly payments.

Their travel expenses also include meals and nights during which Joanna Hardy sleeps at a hotel when Ronnie Hardy has surgery in Baltimore. His surgical procedures include diagnostic evaluations of his cardiac function using a catheter-guided procedure.

Until recently, their travel expenses included gas, but the couple discovered they were eligible for gas vouchers through the Washington County Health Department.

The gas vouchers are provided through the department's transportation program to people who are on medical assistance such as Medicaid and have their own vehicle, says Rod MacRae, the health department's public information officer.

The disease's effects caused Hardy to stop working at Garden State Tanning in the Williamsport area in the early 1990s and to restrict his volunteer activities at Volunteer Fire Co. of Halfway, Md., from firefighting to helping with bingo and then to nothing.

Joanna Hardy stopped waitressing at two local restaurants last December because she needed to be home to take care of her husband, whom she says looked exactly as he does today when they met.

To make a donation to The Ronald Hardy Fund, write a check to "The Ronald Hardy Fund" with "c/o Diane Roberts" on the memo line. Roberts is Ronnie Hardy's mother. Checks can be dropped off at any Bulldog Federal Credit Union branch or mailed to Bulldog Federal Credit Union, 580 Northern Ave., Hagerstown, MD 21742.

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