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NORTH ATTLEBORO - A local woman who struggled with a disorder for nearly 40 years before receiving a proper diagnosis will be featured in an upcoming episode of Mystery Diagnosis on the Discovery Health Channel.

The story of Janet Long, who has Hereditary Angioedema, a life-threatening genetic disorder that causes severe swelling - including in the face and hands - will be featured on the program, which will air on Monday at 10 p.m.

Long said she wanted to tell her story to help others who may suffer from the disease, which is caused by a deficiency in a blood protein known as a C1 inhibitor.

"It's a disease that can be really devastating to a lot of people. It can really keep you from working, keeping relationships and living your life," she said. "I wanted to be on the program because anytime you can get the information out there about this disease, it may help someone else who has it. Someone may recognize the symptoms in a sister or a friend that hasn't been diagnosed."

Long first began suffering from attacks of the disease at age 7. "My attacks were mostly internal abdominal swelling. It was very painful and I spent a lot of time just lying on the bathroom floor due the pain, nausea and vomiting," she said. "During an attack, I would look like I was four to six months pregnant."

Despite numerous doctor's visits and an exploratory surgery when she was 21, Long's doctors remained baffled. She suffered from the effects of the disease until she was 40 years old, when a doctor finally made the correct diagnosis.

"I can't even tell you how many doctors I saw," Long said. "The disease is so incredibly variable that it's hard to diagnose. Doctors told me that it was probably allergies, probably a sinus drainage, probably all in my head.

"When I was about 40, I knew I couldn't live with the pain anymore. I saw another doctor and she was able to put two and two together."

Not only does Long suffer from the disease, but so do her father and one of her daughters - though the latter attacks for Long's other family members were nowhere near as severe.

Long said the diagnosis and the treatment that followed came right in time. She was beginning to get swelling attacks in her throat, which can be deadly.

"At my sickest, right before I was finally diagnosed, there wouldn't be any break. An attack would come on right after another attack finished. I was pretty much incapacitated," she said. "It was an amazing experience to have a diagnosis. After I started treatment, I can remember saying 'Wow, this is what it feels like not to be in pain.'"

Initially, Long was treated with steroids, which relieved the swelling but came with nasty side effects. She became a member of the Hereditary Angioedema Association, where she now serves as the organization's vice president, and began efforts to advocate for a better treatment that was only available in Europe.

It wasn't until October that the new treatment, which replaces the C1 inhibitor in the blood, was finally approved for use in the United States.

Now that she is using the C1 inhibitor to prevent attacks, which does not have any side effects, Long said she has gotten her life back. For more information on the disorder and its treatments, visit the Hereditary Angioedema Association's Web site at haea.org.