Woman Learned She Had Rare Heart Disease at 27 After Years of Misdiagnosis. She Then Saw the Same Symptoms in Her Sister

**Sisters Unite in Battle Against Rare Genetic Heart Condition**

In a poignant tale of resilience and sisterhood, two sisters from Ohio are navigating life with a rare inherited heart disease. Megan Kaverman and her sister Katie Gusching have turned their personal struggles into a story of hope and awareness, both for themselves and others affected by the condition.

Megan, 36, began experiencing health issues at the tender age of 18. Initially, her symptoms manifested as unexplained weight gain and shortness of breath, yet medical professionals dismissed her concerns. “They just pushed it aside, like, ‘You’re too young to have a heart problem,’” she recounted. Over the years, her condition deteriorated, leaving her exhausted after basic tasks and increasingly challenged by simple acts of breathing.

Despite multiple visits to doctors and trips to the emergency room, Kaverman faced a wall of misunderstanding and scepticism. It was not until 2016, following yet another emergency room visit, that she finally received a diagnosis that would change her life: heritable pulmonary arterial hypertension (PAH). This rare genetic condition causes dangerously high blood pressure in the lungs and the right side of the heart.

Embracing her diagnosis as a “rebirth,” Megan sought treatment at the renowned Cleveland Clinic. With the right care, she managed to reclaim much of her normal life, but it wasn’t long before she began to notice alarming signs in her older sister, Katie Gusching.

Katie, now 39, had recently welcomed her first child when she began experiencing shortness of breath during everyday activities like climbing stairs. She also dealt with swollen legs and episodes of blurred vision. Recognising the patterns from her own journey, Megan encouraged Katie to seek evaluation for potential pulmonary hypertension, leading to a similar diagnosis for her sister.

“If she hadn’t gone through hell and back to figure out what she had, who knows if I’d be here,” Gusching told CBS News, expressing her gratitude for Megan’s tenacity. However, receiving the diagnosis brought its own emotional challenges. Initially, Katie felt the weight of grief, contemplating the activities she could be forced to abandon, such as hiking and swimming. The complexities of managing medications and navigating insurance were also significant hurdles.

Throughout this trying time, the sisters have leaned on one another for support. “It’s good to have someone so close to you going through the same thing,” Megan remarked. “It helps ease the pain a little bit if you have each other for support.” With a lighthearted tweak, she added, “Katie’s the older one, but I’ve had this disease longer, so I have one up on her.”

Now both receiving care at the Cleveland Clinic, the sisters are actively participating in clinical trials while also working diligently to raise awareness about their condition. “When I was sick in the hospital, I said to my husband, ‘I want to get better, so I can help advocate for the people that can’t,’” Megan shared, highlighting her commitment to the cause. “If I save one person’s life by bringing awareness, I’ve done my job.”

In their quest for education and outreach, the sisters have taken to scheduling many of their medical appointments together. This arrangement allows them to turn often arduous drives into cherished time spent with each other. “We have things to share whenever we go to the clinic,” said Megan. “If we don’t go together, we’ll call each other and explain our results and everything.”

Despite the challenges posed by their conditions, Megan and Katie remain optimistic, planning trips and experiences that enrich their lives. They are currently looking forward to a celebratory holiday in the Dominican Republic for Katie’s birthday. “It’s really nice to be able to do things that I wouldn’t have done before,” Megan reflected, expressing a renewed zeal for life.

As they continue to navigate their diagnoses, both sisters are determined to use their experiences to inspire and educate others about hereditary pulmonary arterial hypertension. Their bond, strengthened through shared struggles, serves as a reminder of the importance of resilience and support in the face of adversity.