Mother, daughter battle rare disorder
Published 11:40 am Tuesday, May 1, 2012
Imagine a disease that causes parts of your body to swell up to more than three times their size. Imagine a disease that requires monthly visits from a nurse to administer blood transfusions. Imagine a disease that requires medicine which costs as much as $10,000 a month.
For Katrina Hodges of Bainbridge, such a disease is no figment of the imagination — it’s hereditary angioedema (HAE).
Hodges said she has had HAE for as long as she can remember. According to the website HAEA.org, the disease affects one of every 10,000 to 50,000 people and is caused by a defect in the gene that produces a special blood protein. When this gene is defective, it can cause small blood vessels to release unwanted fluids into body tissue, resulting in swelling (also called “edema”).
“I remember having swelling episodes even as far as back and when I was a little girl,” Hodges said. “Back then, I just had to wait for the swelling to shrink back down, and deal with the pain. Thankfully today there’s better research and we have some medicines that can combat it.”
Hodges said that the first ever HAE Day will be this May 16. The idea behind the national campaign is to raise awareness about the disease.
“It’s a rare disease and a lot of people haven’t heard about it,” she said. “I just want to do my part to let people know about it, in case there’s anyone out there who has had the symptoms and may have never understood what is happening.”
Hodges explained that HAE is a hereditary disease and is passed through families. Her son tested negative for the disease, but her daughter tested positive.
Hodges said her daughter, 14-year-old Tamera Stubbs, an eighth grader at Bainbridge Middle School, has not had swelling episodes yet but doctors have said they will eventually begin. However, Hodges hopes that a cure will have been discovered by then.
“This disease is still very early in its research,” she said. “I pray that there will be a cure, so that my daughter doesn’t have to suffer the pain like I did.”
Hodges said she receives blood infusions from a visiting nurse once a month, and regularly travels to a doctor in Tallahassee, Fla., for treatment as well. She can also inject herself with a drug to alleviate any sudden swelling attacks.
“It can literally happen at any time,” she said. “You can just be sitting at your desk and all of a sudden you feel the swelling and there’s sudden pain.”
Hodges’ medicine can cost as much as $10,000 per month, and her insurance does not always cover all those costs. However, she is a member of the U.S. Hereditary Angioedema Association (HAEA), which can provide financial assistance and other resources.
Hodges said it can be difficult for HAE sufferers, because the disease is often misdiagnosed as a food allergy. In fact, she recently had her doctor, Dr. Narlito Cruz in Tallahassee, write a letter that is kept on file at the Memorial Hospital and Manor, so the physicians there know how to treat Hodges if she ever has an emergency.
“I know that letter saved my life at least once, because our wonderful doctors knew what to do to help treat me when I had an edema attack,” she said.
Hodges first discovered that she had the disease several years ago, during a routine search on the Internet.
“I just decided to do a search for ‘uncontrollable swelling,’” she said. “I got in touch with Janet Long, who was the executive vice president of the HAEA, and I found out there was a conference in Orlando, Fla. I was a single mother at the time, but they paid for me and my family to come and attend that conference.”
Hodges said she has remained connected with the HAEA ever since, and regularly participates in surveys and case studies to help research the disease.
“I want to do everything I can to help us find a cure for it,” she said.