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Joanna tried several medications to help manage her symptoms, including sildenafil, Opsumit and Uptravi. Despite her discomfort and fatigue, she continued to work full time and fulfill her role as mother, wife and sister. Joanna rarely shared her reality as someone living with an invisible illness. “She’d go to work so she was not late, become sick at work, and call me to bring her a change of clothes so she could keep going,” Jeff says.
In 2019, after battling her employer for accommodations, Joanna’s family convinced her to leave her job. This put a whole new stress on her family.
“As much as I recognized the [disease] progression, sometimes you didn’t notice it because you were in it every day. It’s much different living with someone who is sick like that,” Jeff says. “You can’t live your life thinking the worst things will happen.”
Thankfully, Joanna and her family found a huge source of hope in two of her doctors: Barbara LaVarge M.D., and Alison Witkin, M.D. Both doctors became the advocates that Joanna and her family needed. Dr. LaVarge suggested Joanna connect with the Pulmonary Hypertension Association (PHA), which proved to be an invaluable resource. Through her participation in two PHA O2breathe walks in Boston, Joanna and her family found a sense of community that they needed.

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