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New hope on the horizon for people suffering from polycystic kidney disease

Posted at 4:34 PM, Mar 15, 2021
and last updated 2021-03-15 18:47:20-04

SOUTHFIELD, MICH. (WXYZ) — Nearly one million American's suffer from chronic kidney disease. In Michigan, it is a burden for one in seven adults, with many on dialysis and waiting on a kidney transplant.

Hope is on the horizon with a new study that may stop the effects of one type of kidney disease that is passed down from generation to generation.

Nicole Wilson is a health care hero. Wilson is a registered nurse with Ascension Michigan who fights for the lives of strangers. She is not just fighting at the bedside of patients, she is fighting for the future of her 12-year-old daughter.

At 23 years old, Wilson was diagnosed with polycystic kidney disease. She is one of 500,000 Americans suffering from this type of disease.

“It is very hereditary in my family, my mother had it, she's no longer with us, her mother had it, uncle, a few cousins that have it as well,” Wilson said.

The first sign a person has polycystic kidney disease is high blood pressure and then cysts grow on your kidneys. The genes for this disease are passed down from generation to generation.

“I can trace it back in my family history going back to the 18 – and 1700s,” Wilson said.

She learned she had it when her mother became extremely ill.

“It got so bad that she ended up in the intensive care unit,” Wilson said.

She says any of her children would have a 50% chance of having it, so she has volunteered for several studies including one for eight years that produced the first and only FDA-approved medication to treat polycystic kidney disease.

“It's something that helps slow the progression of the disease, it does not stop the disease, but it will hopefully keep me off dialysis or needing a transplant a little longer,” Wilson said.

Now she has volunteered for the most recent study just in phase one with Nephrologist and Chief Medical Officer with Ascension Michigan Dr. Keith Bellovich. It's the first study of its kind in North America.

“Would you call this groundbreaking? Certainly, unique in its approach throughout my career. Never been successful up until now,” said Dr. Keith Bellovich.

Eight study participants, including Wilson, get an injection of the medication daily and must remain in the clinic for 12 hours at a time for the monitoring of side effects and to see how well the drug is working.

“The end result (is to) shrink these cysts and hopefully prevent the kidney disease from getting worse,” Bellovich said.

Dr. Bellovich says other therapies have not been able to do this. He says this is a common genetic disease with one in 400 adults having the predisposition for forming these cysts.

“As the cysts grow larger and get bigger, then the kidneys also get bigger and the cysts almost take up the whole space of the kidney resulting in end-stage kidney failure, now requiring dialysis or kidney transplant,” Dr. Bellovich said.

In Michigan, 2,000 people are waiting for a kidney transplant and 15,000 are on dialysis.

Dr. Bellovich says it is vital to know your family history and keeping your blood pressure under control.

If you have a family history, we might be able to know whether you are going to get it and if so, we can halt it early.

There is no timetable as to when this study will be complete but for Wilson, it is not about the present but about making much-needed medical progress for future generations.

“This has been such a plague on my family. Personally, I am on a mission to get this to stop in my family and everybody else's family out there,” Wilson said.

Only 5 % of people with polycystic kidney disease end up with end-stage renal disease, but if this therapy could stop the disease in its tracks it would certainly transform a lot of lives and be truly groundbreaking.