An Interview with Mike Stanzione: On Living with Pompe Disease

Before the movie Extraordinary Measures was made, Pompe disease wasn't widely known about because it's so rare. More research needs to be done and now that more people know about this disease, people who have been misdiagnosed in the past might get the help they so desperately need.

The movie Extraordinary Measures is about a father who struggles to save two of his children from this illness and death. The father in this movie is committed to discovering a drug that will hopefully keep his kids from dying from Pompe disease which is a rare neuromuscular disorder.

My brother in law and Pompe disease survivor, Mike Stanzione, took the time to answer some questions concerning Pompe disease and his life. Here is my interview with him conducted via email.

Mary: Mike, thank you for agreeing to talk with me today about your life and this disease, I am delighted you agreed to do this interview. How are you doing today?

Mike: I'm doing very well today.

Mary: How do you think the movie, Extraordinary Measures will help shed light on Pompe disease?

Mike: People are looking up Pompe disease on the internet because of this movie. Pompe Disease was in the top 10 internet searches on Yahoo the past couple of weeks.

Mary: When were you first diagnosed with Pompe Disease?

Mike: I was diagnosed with Pompe Disease in 2007 after being mis-diagnosed with having Polymyositis in 1998.

Mary: How has Pompe Disease affected your life?

Mike: Everything has changed for me, I can not do 90% of the things I could do before I was hospitalized. However, I now never take anything for granted. Everything I can do I am so thankful for. If I could ever get even half of my life back I would appreciate even being able to make a sandwich.

Mary: How has Pompe disease affected your family?

Mike: My family's life has changed drastically. I did everything with my son when I was home. Now he doesn't have his father around like he used to which I'm sure affects him at home as well as at school. Also I was the only one who drove in the family. So now my wife and son have to rely on friends and neighbors or mass transit.It has also affected us financially since I'm no longer working.

Mary: What would you say is the most important thing in your life?

Mike: God and family are most important to me.

Mary: Do you think this movie, Extraordinary Measures will help get more research money for Pompe Disease?

Mike: I believe it has already helped get research money for Pompe. A percentage of proceeds for this movie is going towards Pompe research.

Mary: What would you like people to know about Pompe Disease?

Mike: That this disease affects infants, children and adults. Not only infants. It can be very devastating.

Mary: Is there anything else you'd like to say?

Mike: I would like there to be newborn screening for Pompe. If infants have this disease and it is not detected they will die before their 2nd birthday.

Thanks a lot for your time Mike!