Resident hopes study will produce cure for disease

At any moment and as often as once a week, Melissa Savor, 43, of Rowlett is stricken by attacks of hereditary angioedema (HAE).

The rare blood disorder can lead to painful attacks of edema, or swelling, of the face, airway, abdomen, and extremities.

“Often there is no warning,” Savor said. “Everyone is different in the severity of the disease. Mine seems to have manifested to a weekly spell. It is usually as I wake up and there it has started.”

The challenge for those afflicted with HAE is in treatment. The Federal Drug Administration has not approved C1-INH concentrate, a treatment which is being used in Europe to treat those living with HAE.

“Swelling very commonly occurs in the bowels,” said Richard L. Wasserman M.D. PhD, director of pediatric allergy and immunology at Medical City in Dallas. “Swelling can occur in the mouth and throat. That is a major cause of death with this disorder. It is life-threatening.”

No FDA-approved treatment exists for Savor and about 10,000 other people in the United States living with the pain caused by HAE. Relief could be near. The Allergy/Immunology Research Center of North Texas is participating in a clinical research study of the effectiveness and safety of C1-INH concentrate.

An estimated one in 60,000 to one in 100,000 people in the United States have HAE, which is caused by an inherited deficiency of the plasma protein, C1 inhibitor (C1-INH).

The purpose of the study, the International Multi-center Prospective Angioedema C1-Inhibitor Trials (I.M.P.A.C.T.), is to demonstrate that C1-INH concentrate n an investigational product n shortens the time to improvement of abdominal or facial HAE attacks compared to placebo.

“If a patient doesn’t tell the doctor what the problem is or doesn’t know, the first time with the swelling it takes a while to figure out what it is,” Wasserman said. “Some will assume it is an allergic reaction.”

Savor’s father, grandfather and great uncle each battled HAE. Her son, Jake Nelson, 19, has tested positive for HAE, but has not shown the symptoms.

“I was diagnosed with it at age 18,” Savor said. “I suffered with mild symptoms starting at age 9. It was like the hives on my skin. It moved to my stomach through my high school years.”

The symptoms of HAE can appear even earlier than it did with Savor.

“The gene defect is there from the beginning,” Wasserman said. “In most cases, symptoms don’t develop until ages 7 to 10. In some people, it worsens after that.”

At times the attacks Savor experiences have been so severe that they have impacted her breathing, leaving her hospitalized for days on a respirator.

Savor works for Developmental Pediatrics, a medical company concerned with accommodating children with special needs, and during an attack can be taken away from work and home life for days.

She’s most concerned, though, with getting a treatment immediately approved to help others like her and those who have not yet been stricken with severe symptoms.

“There could be a lot that have this and don’t know it,” Savor said. “This study is important. I’m doing it for my son. I want him to have a full, productive life.”

The drug being studied has been used in Europe for decades, Wasserman said.

“The FDA requires that studies be done specifically with patients in the United States,” he said. “Even though it has been proven in Europe, it needs to be proved here in the United States.”

“We want the FDA to approve it,” Savor said. “Right now, there is nothing to treat an acute attack.”

Savor has entered the study program and reports favorable results from treatment. The study has been in operation for about two years and patients may be accepted at any time. Those who qualify will be treated upon an attack with either the study drug or a placebo. A second dose of the study drug would be administered through the program two hours after the initial dose if an attack persists.

Anyone with symptoms of HAE age six and older will be accepted into the study. Patients who are interested in learning more about the study may call 972-566-7471 or visit DallasAlergy.net

For more information about enrolling in I.M.P.A.C.T., and to learn more about hereditary angioedema and the symptoms of this rare health condition, visit www.haetrial.com.

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