Scleroderma is an autoimmune disease, and in the U.S., there are approximately 300,000 cases. But experts say that number is much higher because many people have it and don't know it. Marcie Fraser reports.

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Scleroderma is a condition where the body produces too much collagen. It can cause blotchy red spots on the face, cause the hands to be deformed, and in some cases, affect vital organs.

"It's a disease not just of the skin, it's a disease in which there can be fibrosis internally, the heart, the lungs and any part of the GI track," explained rheumatologist Dr. Lee Shapiro.

"My hemoglobin was at very dangerous levels and after many tests it was determined I was bleeding internally from scleroderma," said Suzy Ballantyne, a scleroderma patient.

Scleroderma caused Ballantyne's intestinal tract to bleed. It caused Nancy Sokil's hands to deform and her lungs to suffer. In 20 percent of scleroderma cases, patients can develop pulmonary arterial hypertension, which is high blood pressure in the artery that supplies blood to the lungs and can be deadly.

"If the pressure becomes significantly elevated with the lung artery, on the right side of the heart can enlarge and can fail and patients can die of the disease because of that," said cardiologist Dr. J.D. Filippone.

A common symptom of scleroderma is a condition called Raynaud’s. Symptoms that may indicate the heart and or lungs are involved could be fatigue and shortness of breath.

Patients who are on medication for pulmonary arterial hypertension may be on that medication for their entire life. And if the heart is damaged, it may be permanent.

“The unfortunate things is that often patients are not diagnosed until they are very far along in their disease state and not diagnosed until they have pulmonary hypertension for a long time and at that point, the right heart can already be quite sick and the disease is difficult to treat and hard to reverse the heart disease that already exists," said Dr. Filippone.

Treatment for scleroderma comes in many forms.