She went to "hell and back" for a diagnosis. Then her sister showed symptoms.
Summary
Megan Kaverman struggled for years before being diagnosed with a rare genetic lung and heart disease called heritable pulmonary arterial hypertension, which makes breathing hard and can lead to heart failure. Later, her sister Katie showed similar symptoms and was diagnosed with the same condition, thanks to Megan’s advice. Both sisters now receive treatment and participate in research at the Cleveland Clinic.Key Facts
- Megan Kaverman experienced weight gain, shortness of breath, and severe fatigue starting at age 18 but was not diagnosed until age 27.
- Her diagnosis was heritable pulmonary arterial hypertension, a rare genetic disease that causes high blood pressure in the lungs and strains the heart.
- This disease affects fewer than 1 in 1 million people and accounts for less than 4% of pulmonary hypertension cases.
- Symptoms include difficulty breathing, swelling in legs, fatigue, and can lead to right heart failure.
- Megan’s sister, Katie, showed similar symptoms and was diagnosed after Megan suggested testing for pulmonary hypertension.
- Both sisters are treated at the Cleveland Clinic and participate in clinical trials to find better treatments.
- The disease has no cure but can be managed with medication and ongoing care.
- Support between the sisters helped them cope with the diagnosis and treatment challenges.
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