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Facing Alport Syndrome: A Teen/Young Adult Perspective
Manage episode 293151214 series 2861129
Tammy Flynn, Tammy Flynn: podcaster, and Special needs advocate a에서 제공하는 콘텐츠입니다. 에피소드, 그래픽, 팟캐스트 설명을 포함한 모든 팟캐스트 콘텐츠는 Tammy Flynn, Tammy Flynn: podcaster, and Special needs advocate a 또는 해당 팟캐스트 플랫폼 파트너가 직접 업로드하고 제공합니다. 누군가가 귀하의 허락 없이 귀하의 저작물을 사용하고 있다고 생각되는 경우 여기에 설명된 절차를 따르실 수 있습니다 https://ko.player.fm/legal.
As we wrap up our Alport Awareness Series, I am so excited to welcome to the show, Grant Bonebrake & Maddie Martin, Volunteer Patient Advocate Alport Foundation.
About Grant: Grant Bonebrake is a high school senior in San Diego, CA. He was misdiagnosed with the wrong kidney disease until age 11 when he experienced hearing loss that led to proper diagnoses of Alport syndrome, a rare genetic kidney disease. His involvement with Alport Syndrome Foundation led him to become an active patient advocate. In December 2020, Grant received the national RareVoice Award (Teen Category) for Legislative Advocacy from the EveryLife Foundation for Rare Diseases. He also volunteers with the Young Adult Representatives of Rare Disease Legislative Advocates program, and National Kidney Foundation. Grant is currently working with other teens to document the experiences and insights of young people living with Alport syndrome.
About Maddie: Maddison Martin just turned 22. She was originally misdiagnosed with Glomerulonephritis at age 2 before receiving a formal diagnosis of Alport syndrome, via kidney biopsy, at 4-years-old. At the age of 20, she received the Gift of Life in the form of a kidney transplant from her high school attendance secretary, Tammy. Inspired by her Alport journey, Maddison is currently a nursing student and enjoys spending free time with her family.
Listen in as Maddie & Grant share their personal journeys, the physical & emotional aspects of being a teen with rare disease and how they have embraced their diagnosis.
#AlportAwareness
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