Nina Felch’s classmates at Holmes Middle School didn’t know she has a debilitating genetic disorder until last year, when as a seventh grader she created a science project about Hereditary Angioedema.
“Some people looked at me in shock,” Nina said. “Some people said I was different. I was like, ‘Yeah, I’m different, got a problem with that?'”
This year, Nina wants everyone to know about the rare condition that impacts her life every second of every day. “I gave up hiding myself,” she said. “We want to inform our peers and spread awareness.”
Fourteen-year-old Nina, with the help of her sister, 11-year-old Rayna, who also has the disease, revamped and improved the presentation, based on suggestions that judges, teachers and peers gave last year.
The pair will deliver it Friday at this year’s Family Career and Community Leaders of America state competition in Denver. The in-school student organization focuses on personal growth and leadership development through family and consumer sciences education and community volunteerism.
“This project means a lot to us,” Rayna said this week, while practicing the presentation. “Every year we have to fight for funding. Many people do not understand. Many people are not aware of the signs or symptoms.”
People who have the condition are born missing an important protein in their blood that blocks inflammation.
As a result, attacks cause excessive, disfiguring and painful swelling in the face, hands, stomach, airway and other parts of the body. Triggers can include dental procedures, bug bites, walking long distances, hot showers, even stress and anxiety.
The condition is not common – it affects up to 1 in 50,000 people, said Dr. Daniel Soteres of Asthma and Allergy Associates in Colorado Springs. He’s considered an expert in the disease.
Medical therapies to treat attacks as well as synthetic replacements for the missing protein have been lacking, said Soteres.
For the past eight years, he has led clinical research trials using Nina and Rayna, along with their mother and grandmother, who also have the condition.
Nina and Rayna are two of six children worldwide to participate in trial therapy for a replacement protein for pre-pubescent kids, the doctor said.
The disease isn’t well known, he said. The average length of time for a diagnosis is 10 years.
Recovery from an attack normally takes three to five days, although medicine shortens it to one day, which Soteres said is empowering for patients.
Rayna’s had two attacks in the past month that made her stomach balloon.
“She wasn’t eating or drinking or walking. Everything hurt,” said Colinda Felch, the girls’ mom.
“It feels like some is sitting on your stomach,” Nina added.
Until a decade ago, the only therapy was a testosterone derivative, which Soteres said for teenage girls is especially unhealthy because of the side effects. Those include hair growth, changes in breast development at puberty, depression, moodiness and others.
He’s working on FDA approval for a pediatric drug, which would lead to insurance companies covering the cost for patients.
About 15 years ago, the family had an aunt who died after her throat swelled and constricted breathing following dental work.
“It’s cool to be part of something that’s affected this family so deeply,” Soteres said. “They’ve responded well to the medicine and are moving in the right direction.”
Felch sought out Soteres for a diagnosis on her daughters when they were younger, and then asked for an alternative treatment to steroids. Soteres’ office has become like a second home to the family because they have been there so often.
Felch said her own attacks are so bad, she once spent the night on the couch in the doctor’s office.
“It’s been very frustrating,” she said.
Felch has such a severe level of the disease that she can’t work.
“We learned how to get ourselves up in the morning and cook for ourselves, when mom couldn’t move and dad wasn’t home,” Nina said.
Wearing T-shirts with the words, “Hereditary Angioedema: Wouldn’t it be swell to find a cure,” Nina and Rayna are using a poster board they made to drive home their points during the state competition.
They’ve outlined the particulars of their disease, family members who have it, photos and other information. They’ve also assembled a notebook.
Nina likes public speaking, and Rayna is getting the hang of it.
Nina broke down in tears last year in front of the judges.
“I had never talked about it because people look at me differently when they know,” she said.
This year, Nina feels stronger and more confident. Plus, she has her sister as a partner, which led to the title of their presentation, “Sisters Fighting Together.”
“We are proud of what we have accomplished,” she said.