A woman was diagnosed with a rare heart disease at 27. Then she saw the same symptoms in her sister.
Key Points:
- Megan Kaverman was diagnosed at 27 with heritable pulmonary arterial hypertension (PAH), a rare genetic heart-lung disease that caused her severe fatigue, shortness of breath, and early heart failure after years of misdiagnosis.
- Kaverman’s sister, Katie Gusching, was later diagnosed with the same condition following similar symptoms postpartum, with Kaverman’s encouragement playing a crucial role in her timely diagnosis and treatment.
- Heritable PAH narrows lung arteries, raising blood pressure and straining the heart; it affects fewer than one in a million people and has no cure but can be managed with medication and ongoing care.
- Both sisters receive treatment at the Cleveland Clinic, participate in clinical trials for new therapies, and have become advocates to raise awareness about pulmonary hypertension and encourage early diagnosis.
- Despite challenges, the sisters report improved quality of life with treatment, engaging in activities like hiking and running, and find emotional support and closeness through sharing their experiences and medical journeys together.