Medical Research Charities > News > Alphas to highlight Rare Disease Day with focus on research, awareness (Alpha-1 Foundation)

Alphas to highlight Rare Disease Day with focus on research, awareness (Alpha-1 Foundation)

When Jackie English was pregnant with her youngest son, she thought she was out of breath because of her pregnancy.

Years later, while working in a nursing home, she found it difficult to turn a patient over in a bed without losing her breath.

When she lost her breath while cleaning the kitchen counter one day, she knew something was wrong. She sought the advice of her primary care physician, who did a battery of tests. The doctor referred her to a pulmonologist, who finally diagnosed her with Alpha-1 in 2010.

Today, she is doing all she can to raise awareness of Alpha-1 as co-leader of the Open Arms for Alpha-1 Support Group in Peoria, Illinois. The group held a 5K awareness run last September, and in previous years has held Alpha-1 awareness volleyball tournaments. The Jackie (Carey) English Alpha-1 Demolition Derby also raises awareness of Alpha-1.

At all their events, members of the support group hand out brochures with information about Alpha-1.

“Our group’s always doing what we can to raise awareness,” English said.

(Jackie English, in photo, co-leader of the Open Arms for Alpha-1 Support Group, with Deb Burwell, right, the group’s other co-leader. Burwell’s granddaughter, Eliana, is in the background.)

Click here to read the full story from Alpha-1 Foundation.