Strumming All the Right Chords
Most mornings for Mary began the same way: she would wake up and begin the ritual of inspecting her hands and feet to determine which part of her would be immobile that day.
“Some days it would be, ‘I can’t use both of my hands,’” Mary says. “If I couldn’t use my hands, I would drive with my elbows. I got used to walking on my knees.”
Mary has lived with hereditary angioedema (HAE), a rare and sometimes life-threatening genetic condition, most of her life. HAE causes roving swelling in various parts of the body, including hands, feet, face, and airway.
“HAE is a surprise disability, where there are days you go to bed not knowing how — or if — you’ll wake up in the morning,” Mary said.
Mary’s disease meant planning her life around a shorter-than-average life expectancy. She says she didn’t expect to live beyond 35.
“I would think every day about what I’d done with my life,” Mary says. “I didn’t put money in a retirement account because I didn’t expect to live that long.”
Mary built her life around her symptoms. People living with HAE often experience swelling in their skin, hands and feet, and a general tiredness and fatigue. For Mary, a self-described “active woman,” this was especially challenging. She was a frequent runner and enjoyed playing guitar in her free time. If she wanted to play guitar for 20 minutes one night, she’d have to plan on not being able to use her left hand the next day.
“There were days when everything was swollen, and I would be in bed for four or five days,” Mary says.
Years of clinical trials and waitlists meant Mary’s health and wellness were continually in flux. A new treatment significantly reduced Mary’s symptoms but she couldn’t afford it. Mary considered crowdsource fundraising but knew she couldn’t raise two weeks’ worth of the funds required for her treatment, let alone a full year.
After learning about TAF from a support group member, Mary applied to TAF’s Hereditary Angioedema Financial Assistance Program. Mary has received TAF assistance for her HAE treatment for the past three years and says her quality of life is vastly improved.
“It’s not just providing treatment to people for comfort, it’s quality of life and longevity of life,” Mary says. “Without TAF, I couldn’t afford it.”
Now Mary spends her free time running on her treadmill, playing guitar and piano, and performing at open mic nights in downtown Portland. As an active mom, she can be there for her 10-year-old daughter and family without stress or worry. Mary says that some days, she forgets she has HAE at all.
“I feel like I’ve hit the lottery,” Mary says. “I can never say thank you enough. There truly aren’t any words to just give the gift of a ‘normal’ life.”
