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Patients
Jane’s Story
Living with Bronchiectasis
Jane first realized something was wrong with her lungs during a CPR course, when an instructor noticed her labored breathing. At the time, Jane was relatively healthy, but experienced frequent colds, flus, and bouts of bronchitis. After the CPR course, she visited a local doctor and was diagnosed with pulmonary sarcoidosis. Over the next several years, Jane cycled through multiple doctors, diagnoses, and treatments as her illness continued and her symptoms progressively worsened. It took more than 30 years for Jane to be diagnosed with bronchiectasis by a pulmonologist in New York.
“It took more than 30 years for me to be diagnosed with bronchiectasis, and it was a lonely journey. It’s so important to advocate for yourself and keep trying to find answers.”
Jane is a BRINSUPRI patient who has been compensated for her time.
Julie’s Story
Living with MAC Lung Disease
In December of 2011, just before her 60th birthday, Julie was running one of her many marathons when she started to feel more fatigued than usual. “At mile 20 I could barely go on, which was unusual for me,” she said.
She pushed through and finished the race but that night she woke up coughing up blood. Given that Julie had been diagnosed in her thirties with pulmonary hemangioma, her doctor recommended she be hospitalized. Julie was admitted to the hospital and tested positive for tuberculous. Her pulmonologist, however, suspected MAC lung disease and referred her to an infectious disease specialist, who confirmed it by bronchoscopy.
Julie is an ARIKAYCE patient who has been compensated for her time.
“It’s important to have a doctor who’s not only very knowledgeable but also your advocate and supporter, as well as to stay active, eat right, and understand the treatments.”
Colleen’s Story
Living with PAH
When Colleen was 26, she was thrilled to give birth to a healthy baby boy. But despite having a normal pregnancy and delivery, Colleen had a hard time bouncing back—she had trouble exercising and didn’t feel fully functional.
Initially, Colleen chalked it up to typical postpartum symptoms and the stress of being a new mom, but she continued to struggle. When her son was about a year old, Colleen came down with multiple bouts of pleurisy over a few months, eventually landing in the emergency room. There, a chest X-ray showed she had an enlarged heart, which led to an EKG, echocardiogram, and right heart catheterization. Within two weeks, Colleen was diagnosed with PAH.
“My advocacy work is every bit as important as my medication. It gives meaning to an impossible situation. I can’t not have PAH but I can work to make it easier for myself and others.”
Colleen has been compensated for her time.
Seda
Mother of a Son Living with DMD
As Marko’s mom and caregiver, I’m constantly balancing being his nurse, his therapist, his advocate, and simply just being his parent. It is extremely challenging and imperfect because he is still a teenager. I have to balance setting boundaries and enforcing consequences with the constant reminder that DMD is fatal.
Hope, to us, means one day having a therapy that really can change the course of DMD. When you have a child, you celebrate every milestone. Your heart fills with joy when they take their first steps, when they learn to ride a bike. With DMD, after the age of six or seven, you have to watch this disease take away those milestones, one by one, with every passing year. These boys urgently need a different future.”
Seda has been compensated for her time.
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