Gail is no stranger to the challenges of managing lipoprotein(a), also known as Lp(a), a type of cholesterol that puts her at increased risk for heart disease. Through her personal experiences, she has become a passionate advocate, determined to raise awareness and empower others facing similar health battles.
In a candid conversation with NOWINCLUDED’s Social Media Specialist, Gail shared the story of her diagnosis and the obstacles she has overcome in her quest for optimal heart health.
Gail’s journey began in 1997 when her first cousin, an emergency medicine physician, developed peripartum cardiomyopathy shortly after giving birth. “Fortunately for her, she was an emergency medicine physician, so when she wasn’t feeling well, she knew she needed to get to the emergency room,” Gail recounts.
It was during her cousin’s treatment that the cardiologist (heart doctor) discovered her elevated Lp(a) and recommended she reach out to family members to encourage them to get tested. This cascade screening led Gail to her own diagnosis, a revelation that would shape the course of her healthcare journey.
“When I mentioned it to my primary care physician, he really was not very knowledgeable about Lp(a), but he did agree to allow me to get tested,” Gail explains. “Both of us were very, very surprised when the results came back that I, just like my cousin, did have elevated (high) Lp(a) levels.”
Despite the initial lack of awareness from her doctor, Gail was determined to take charge of her health. She began closely monitoring her condition, seeking out specialists and exploring treatment options.
The road has not been without its challenges, however. Gail has faced difficulties finding the right medication, experiencing adverse reactions to various statins and PCSK9 inhibitors. “I tried four different statins and had horrible reactions to all of them, so I was diagnosed as being statin intolerant, which is a real problem,” she shares.
It wasn’t until the introduction of Inclisiran and Acetamide that Gail found a combination that effectively lowered her cholesterol levels. Even then, she had to advocate for herself, reminding her doctor of her history of coronary artery disease and the need for more aggressive treatment.
Gail’s story underscores the importance of patient advocacy and the need for greater education around elevated Lp(a). “Knowledge is power, and it’s just best to just get tested,” she emphasizes. “It’s just you just get tested once you either have it or you don’t.”
As Gail navigates her own health journey, she remains open to participating in clinical research studies, hopeful that new treatments will emerge to better manage her condition. Her resilience and determination serve as an inspiration to others facing similar challenges.
Through her partnership with NOWINCLUDED, Gail hopes to amplify her voice and share her experiences, empowering others to take charge of their heart health. “I really need to, just as I said, be more proactive, because I’m sure that there are a plethora of (many) resources that I would find interesting and share with others who also have Lp(a),” she says.
Gail’s story is a testament to the power of perseverance and the importance of patient-centered care. By sharing her journey, she aims to inspire others to advocate for themselves, seek out the resources they need, and ultimately, take control of their heart health.
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