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Katherine Michiels and her teenage daughter share more than an interest in school activities. They also share an inherited disease that has devastated their family for generations -- it's called polycystic kidney disease, better known as PKD.
In fact, Michiels's mother has traced the PKD gene to her great-grandmother, who passed it on to her grandfather, then her father, who was one of 15 children.
"Eleven survived to child bearing years and eight of the 11 had PKD," said Michiels.
Eight siblings had a 50/50 chance of passing it on to each of their 56 children. In fact, PKD now affects more than12 million people worldwide. It can cause fatal kidney failure and has no known cure.
Michiels learned she'd passed it on a little over a year ago, when her daughter Mary Katherine suffered a painful attack caused by the cysts forming on her kidneys.
Still, when she tells friends and acquaintances about it, she says few have even heard of it.
"How come they know about other diseases like muscular dystrophy MS or sickle cells or downs, when they've never heard of PKD, when we can tell you all those diseases combined have fewer numbers than we have on our own," said Michiels.
That's when Michiels decided that PKD had flown under the radar long enough. After joining the PKD Foundation, she began organizing a walk at Crissy Field, the first in San Francisco, to raise money and awareness of PKD.
Dr. Parul Patel is a transplant nephrologist at California Pacific Medical Center in San Francisco, and has written extensively on PKD. He says new treatments are desperately needed.
"Right now there's no specific therapy that's been shown to retard progression of the cysts. But there are studies of molecules that affect pathways that lead to progression of Cysts," said Dr. Patel.
Mary Katherine Michiels is now enrolled in a clinical trial involving two of those drugs and says she's felt better over the last few months. Still, her mother is hoping that increased awareness and research money will ultimately end the family legacy, in time.
"That she'll live a long life and won't need a transplant and that she'll be able to have children, and they'll have a treatment for it, so if they get PKD they won't have the fear of not surviving," said Michiels.
Related link:
San Francisco walk for PKD
