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Nola’s story

Female PAH patient, Nola, smiling in the front seat of a car with her nephew smiling in the back seat

Nola had always been fit and active. As the youngest of eight children and with a large extended family, Nola spent most of her time taking care of others.

Her busy life meant she was more active than ever, so Nola wasn’t sure why she was gaining weight. She was experiencing other strange symptoms too. Doing simple errands would leave her short of breath, and her feet would swell while she was exercising.

Nola tried to ignore what her body was telling her. Unfortunately, her symptoms worsened to the point that something as simple as brushing her teeth could send her heart racing. After visiting many doctors, she was eventually diagnosed with pulmonary arterial hypertension (PAH).

Instead of letting my doctors know what was going on, I rationalized everything away. And as the symptoms increased and got worse, that’s when I had to realize that it’s time to call in a professional and speak to my doctor about what is really going on with me.

Getting diagnosed with a rare disease was a shock, and Nola worried about what PAH meant for the future. But Nola decided that she was going to fight to manage her condition.

By advocating for herself along every step of her PAH journey, Nola is outnumbering PAH.

Female PAH patient, Nola, taking a selfie while wearing glasses outside in front of shrubs

Finding the right care team

Nola struggled right after her diagnosis. Her doctors put her on oxygen, but she still struggled with simple tasks like making the bed.

Nola became even more discouraged after the first lung specialist she met with turned her away, saying that he couldn’t help her since she didn’t smoke. But Nola didn’t give up. She knew help was out there— she just had to find the right people.

No one knows her body better than Nola does. That’s why Nola has learned to speak up about her symptoms to advocate for herself and ensure she’s getting the care she needs.

Nola found a team of PAH specialists that understood her condition and could help her learn to manage it. These doctors listened to Nola and adjusted her management plan.

Nola’s experience has taught her a lot—especially how important it is to speak up when she’s feeling unwell. She knows her body best, and her team can’t help her if she isn’t open and honest about what she’s experiencing. For Nola, opening up to her specialists was the first step.

Nola also understands that it’s not easy for everyone to do this. She suggests that people who aren’t sure about speaking up reach out to a PAH advocacy organization for ideas about what to do.

She’s also found encouragement in support groups of other people with PAH. Being around people who understood what she was going through helped Nola figure out how to use her voice.

Now, Nola is supporting other people with PAH as they find their voices, too. As a patient advocate, she encourages other people with PAH to open up and share their experiences.

Nola’s message to people living with PAH: If you have PAH, don’t be afraid to tell your doctors and your support team how you’re feeling, whether you’re doing awesome or not as great as you’d like. By advocating for yourself, you can help your care team put together a management plan that may help your symptoms.

Just like it did for Nola, advocacy can put you on the path to outnumbering PAH.

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