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Washtenaw County Man With Rare Genetic Disease Helps Others In Similar Situation

Credit Jorge Avellan / WEMU
Kevin speaks with Rosie Morrison (left) from the Cancer Support Community and Dr. Elena Stoffel from the University of Michigan Health System.

Imagine the fear and disappointment to learn you have a relatively rare genetic condition that, at some point, could give you cancer.  It has to be devastating.  Some end up feeling defeated.  Others find inspiration and use the diagnosis as a launching point to help others.  A York Township man chose the latter.

"Oh no, I felt devastated and I was really hoping I didn’t have this and I already knew something about it because my father and brother have this."

Kevin Myers is 58 years old now.  But he was only thirteen when diagnosed with Familial Adenomatous Polyposis, or F.A.P. for short.  It's an inherited genetic condition that has nearly a 100 percent chance of leading to colon cancer, if untreated.

Last year, Kevin decided to launch a F.A.P support group, knowing there had to be others living alone with the affliction.

"So you may have seen Kevin that I shared about our next meeting on the Cancer Support Community Facebook page."

That is Rosie Morrison.  She is the program director at the Cancer Support Community of Greater Ann Arbor.  She says in the year or so the group has existed, it has grown to serve about 30 people, many of whom were in need of support.

"Cancer and related conditions can be really isolating so connecting with others is extremely powerful for a lot of people."

According to the Mayo Clinic, 75% of the cases are passed genetically.

Based on national figures, it means there would only be about a few dozen people with F.A.P in Washtenaw County.  This disease causes polyps to develop in the large intestine and rectum which requires vigilant monitoring and treatment.

"I think that it’s important to talk about the fact that colon cancer is the third most common cancer in the U.S.  In about five of every one-hundred colon cancers arise in individuals who have an inherited pre-disposition to developing colon cancer."

That is Dr. Elena Stoffel.  She is Kevin’s doctor at the University of Michigan Health System. 

"So Kevin we talked about your last endoscopy, we saw what we expected to see which were that there are still some polyps in the duodenum, they don’t look any bigger than they use to which is great.  I think our hope is that the medication will continue to keep them in check.  I certainly hope so."

As part of Kevin’s treatment, he had his colon removed as a teenager and has had an ileostomy pouch ever since.

"So you’re thirteen, they tell you that you have this, at thirteen years old, do you even understand at that point what this is?  Not very well, and the only thing I could think of then was how am I going to hide this in school, how am I going to continue in my gym classes."

Kevin overcame that despair and is now also helping Lynch Syndrome survivors through his group such as 71-year old Joe Schigley.  Lynch Syndrome is very similar to F.A.P, but arrives in the body with fewer polyps.

"Normally speaking, when I go to groups, I’m probably one of the quiet ones so I sort of not say anything.  The discussion that went on with this group seemed to make it easier for me to open up at the first meeting."

With the help of the U of M’s Cancer Genetics Clinic, Kevin’s support group is being used a pilot program in up to eight other communities around the country.  Just last week, he was a guest speaker at one in Chicago.

"It’s a real proud moment when I see people talking about their lives who have often felt isolated like I did for so many years." 

Finally, Kevin wants those diagnosed with F.A.P. to know it’s not the end of the world.  He runs 10K’s and even skydives, and his father continues to live with it at 90 years old.

Below are links that have more information on Familial AdenomatousPolyposis, or Lynch Syndrome, as well as the Cancer Support Community of Greater Ann Arbor.






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— Jorge Avellan is the Ann Arbor beat reporter and anchor for 89.1 WEMU News.  Contact him at 734.487.3363 or email him javellan@emich.edu

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