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Focal Segmental Glomerulosclerosis (FSGS)

Kevin M.

Adults

In 2002, Kevin found himself suffering from debilitating migraines. As they got worse Kevin decided to see a doctor and learned that his blood pressure was abnormally high. Kevin had always been someone who exercised and loved to cook. In fact, healthy cooking was very important to him, so it came as a shock that he had hypertension. The doctor prescribed a few blood pressure medications, but none of them were effective. The doctor disclosed to Kevin that this was most likely due to his eating habits, although Kevin and this physician had never discussed his lifestyle or daily habits at all. At that point, Kevin decided to seek a second opinion.

This would happen two more times. He went to a doctor, they diagnosed him with high blood pressure, but both times the doctors mentioned something as a cause that seemed to derive from their biases as opposed to dialogue with Kevin. One day, in desperate need to see a doctor, Kevin got an appointment at a women’s clinic due to lack of physician availability. He went and met the doctor who would become his primary care physician and who eventually steered him to a nephrologist, which ultimately led to a diagnosis of FSGS.

He reconnected with NephCure (he had attended a NephCure benefit in Chicago in 2015) and began volunteering in 2018, eventually joining the board. Through NephCure, Kevin has had the opportunity to advocate for patients and their loved ones.

Like most FSGS patients, Kevin’s routine began to include many different medications not to cure FSGS or “fix” his native kidneys, but instead to preserve them for as long as possible. Kevin began to refer to this as “medicinal roulette.” Kevin used this phrase due to the process being a constant quest to see if various medications would slow the deterioration of his kidneys. Kevin recognized now that he was much luckier than most FSGS patients. It wasn’t until 2015 that his nephrologist told him that he was most likely 2 years away from either needing a transplant or starting dialysis.

Fortunately, In July of 2017, a friend of his from college donated a kidney to him. His FSGS has been in remission ever since. Volunteerism had always been a part of Kevin’s life and once he was healed from his surgery, he sought a way to support patients and caregivers who have been affected by FSGS. He reconnected with NephCure (he had attended a NephCure benefit in Chicago in 2015) and began volunteering in 2018, eventually joining the board. Through NephCure, Kevin has had the opportunity to advocate for patients and their loved ones. Whether it’s talking tone on one with a newly diagnosed patient, sharing his experience with a panel of physicians or speaking to a team of researchers at a pharmaceutical company; he has greatly enjoyed being a part of NephCure and hopes to support others in ways that will make their journeys easier.

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Related Resources

Video

MCD vs. FSGS: Breakdown of Diagnostics and Clinical Course

Fact Sheet

Focal-Segmental-Glomerulosclerosis (FSGS)

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