Sisters Diagnose Rare Heritable Pulmonary Hypertension After Years of Missed Symptoms
Megan Kaverman was finally diagnosed with heritable pulmonary arterial hypertension at 27, and later helped her sister Katie Gusching recognize the same condition.
After a decade of vague symptoms and dismissed medical advice, Megan Kaverman was diagnosed with heritable pulmonary arterial hypertension at age 27 following intensive testing in an ICU. The rare genetic disorder, which narrows lung arteries and raises heart pressure, was treated at the Cleveland Clinic, allowing her to resume normal activities. Two years later, her sister Katie Gusching, newly postpartum, experienced comparable breathlessness and a brief vision loss, prompting Kaverman to suggest pulmonary hypertension testing.
Gusching received the same diagnosis and, with her sister’s support, began treatment that has since stabilized her condition. Both sisters are enrolled in clinical research under pulmonologists Dr. Kristen Highland and Dr. Adriano Tonelli, and they advocate for greater awareness of the disease. Their story highlights the challenges of diagnosing rare heart conditions and the importance of patient advocacy.
Why it matters
It shows how rare heart disease can be missed for years and the vital role of patient advocacy in early diagnosis.
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