When is it Time to Reveal a Rare Disease: 25-Year-Old Woman with Hereditary Angiodema Speaks Out

CENTERVILLE — For the first time, Lacy Hoskins is speaking out about a rare disease she has kept secret from many of her friends and family.

Hoskins, 25, was diagnosed nearly a year ago with hereditary angioedema — or HAE — a rare and serious blood disorder that causes episodes of painful swelling in the hands, feet, limbs, face and intestinal tract.

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She has been dealing with the disease’s symptoms for five years, but feels like one of the lucky ones, because people with HAE often go 10 to 20 years before receiving the correct diagnosis because of the rarity of the disease.

At one point in her early 20s, the pain in her stomach was so intense, Hoskins thought she was dying. The disease can be fatal if it continues undiagnosed and is treated incorrectly, especially when an individual’s throat swells up and constricts breathing. Once the disease is correctly diagnosed, individuals with HAE can live long, healthy lives.

When she first began experiencing symptoms in her early 20s, Hoskins felt like people only associated her with the disease, so she slowly started keeping details about the disease and the symptoms to herself.

“By keeping quiet about it, I could be like everyone else,” said Hoskins, who quietly endured her pain, “but now I want to help other people.”

She is hoping that by sharing her story, other people who may be experiencing the same symptoms can receive help sooner.

Though the swelling caused by the disease can be painful, Hoskins has learned to create a new normal in her life, working around the disease. She currently attends Weber State University, studying to be a victim advocacy lawyer.

One of her professors once told her to think about dropping out because of her illness, which sometimes prevents her from attending class — but it only motivated her further.

“This disease is telling me I can’t, but I am not my disease,” said Hoskins. “I’m proving that I’m stronger than I ever thought I was, and if I’m this strong, then anyone can do it.”

The Hereditary Angioedema Association, a support network dedicated to helping people with angioedema, has been integral in bringing hope to people with the disease.

“They have a community of people with the same rare disease,” said Executive Vice President Janet Long, refering to the various opportunities the group provides to help people get the right treatment. “Ultimately, we want them to achieve lifelong health.”

Long says one in 30,000 people in the country are affected by HAE.

Medicine treating HAE changed dramatically five years ago. According to Hoskin’s physician, Dr. Douglas Jones at Rocky Mountain Allergy in Layton, the only thing they could use was morphine to dull the pain.

“It was horrible because we were just trying to manage the symptoms and get them through their attacks,” said Jones. “Now there is medication to target the problem, which is much more effective at treating the disease and not just managing it.”

One of the most difficult problems Hoskins encountered during her journey to diagnosis was the countless doctors telling her the pain was in her head.

“I became a prisoner in my own body, because it is an invisible disease, and you can’t see the pain,” Hoskins said.

Many patients before receiving the correct HAE diagnosis are told they have a food allergy, lupus or even rheumatoid arthritis, Jones said. Many go decades before getting the right treatment, so by the time they get to a doctor who is familiar with the disease, they are extremely frustrated.

“I think more than anything, once they get a diagnosis and treatment, they have hope,” Jones said. “They have had multiple physicians with inaccurate diagnoses, treatments that don’t work, and they are literally scared because they hurt and have been told they are crazy, but when their throat swells, or their abdomen hurts, they don’t see an end. Now they can have good treatment, and they have hope and a life.”

Read more at Standard-Examiner. Written by Dana Rimington.