She went to "hell and back" for a diagnosis. Then her sister showed symptoms.

Key Points:

• Megan Kaverman was diagnosed at 27 with heritable pulmonary arterial hypertension (PAH), a rare genetic disorder causing lung artery narrowing and heart failure, after years of unexplained symptoms and misdiagnoses.
• Her sister, Katie Gusching, was later diagnosed with the same condition following similar symptoms postpartum, with Megan’s experience prompting early testing and treatment that likely saved her life.
• Heritable PAH affects fewer than 1 in 1 million people and has no cure, but treatments can manage symptoms and improve quality of life; both sisters receive care and participate in clinical trials at the Cleveland Clinic.
• The sisters advocate for greater awareness of pulmonary hypertension, encouraging others with unresolved cardiac symptoms to seek testing, and find support and strength in sharing their experiences.
• Despite the challenges, both women report improved health and renewed ability to engage in activities like hiking and running, highlighting advances in treatment and hope for patients with PAH.