There are several thousand rare, genetic diseases.
Talk to your relatives to find out if any conditions run in your family.
NEXT: INHERITED DISEASESShe's the author of The Reluctant Donor
and an advocate for ADPKD
When Suzanne was 19, her mother experienced kidney failure as a result of autosomal dominant polycystic kidney disease (ADPKD). By that time, her family had experienced 4 deaths from ADPKD—her grandmother, aunt, and 2 uncles. Years earlier, Suzanne’s parents realized ADPKD was a genetic disease and tested all the sisters to see if they had inherited it. Of the 4 sisters, 3 inherited ADPKD, but their parents lied about the test results; they didn’t think teenagers could handle the truth.
Although she didn’t inherit the disease, when her sister JoAnn needed a kidney transplant, Suzanne became her donor. When she was being tested to see if she could donate to her sister, someone asked her, “PK what?” and if she was giving both of her kidneys. The lack of knowledge about ADPKD and organ donation was irritating to Suzanne and fueled her to write The Reluctant Donor, covering nearly 70 years of ADPKD in her family. The book aims to explain the impact of ADPKD on families and to provide hope.
Since becoming a mother, she’s always talked openly about her family health history, including ADPKD, to ensure her 2 daughters were comfortable with the topic. Suzanne encourages families to openly discuss their health history so they can better manage their conditions.
I feel as though I am supposed to be the one to write my family’s story. Sharing my family’s health history of autosomal dominant polycystic kidney disease became my purpose.
Suzanne, seated in the front row, second to left, surrounded by her family, 7 of whom inherited ADPKD.
Ready for a family health history conversation?
Talk with your closest relatives (parents, siblings, and children) first before you move on to grandparents, aunts and uncles, and nieces and nephews. Next, reach out to third-degree relatives including cousins and the “greats,” such as a great-grandparent, and ask them about their health history.
START SHARing