May is Prader-Willi Syndrome Awareness Month

By Lindsay Kondis, Peer Advocate

My name is Lindsay Kondis. I am originally from Plum Borough. I have lived in Mt. Lebanon for almost 20 years with my roommate. When I was born in 1981, I stopped breathing three times and was rushed to Children’s Hospital. They unfortunately did not know I had Prader-Willi Syndrome at that time. When I was eight years old, I started going to an Endocrinologist, and that is when I was diagnosed with Prader-Willi Syndrome.

After I was diagnosed with PWS I was still living with my family. In my late twenties is when I started to receive services and support from Mainstay. I attended high school, and I also went to CCAC for 1and half years. After I completed my year and a half, I went to the Children’s Institute for 3 months before coming to live at Mainstay.

At Mainstay my typical day includes exercising 2 times a day for 45 minutes. That is about 2 hours total for the day. This is my routine for me to stay healthy living at Mainstay with a rare disease. It is very easy for me because l lived with PWS for 42 years and I live with Mainstay getting supported and I am also now an employee at Mainstay besides being a resident.

Some of the activities I like to do are going out to different places to be engaged with my community around Mt. Lebanon and parts of Pittsburgh. I like doing activities that include going to the movies and getting coffee at Dunkin Donuts every two weeks on a Monday or Tuesday with CPS staff. I also like to do puzzles in my free time. I also like having a job here at Mainstay. I love going to dances every third Friday of every month because it is a great way of networking and making new friends from different agencies other than Mainstay.

At Mainstay I am a part of many committees, and I am a self-advocate in Voices of Mainstay. I also like having many friends outside of Pittsburgh and here at Mainstay. My role here at Mainstay is a Peer Advocate. I enjoy my job here at Mainstay, and I work here on Wednesdays and Thursdays. I am a very busy lady these days. I am a social butterfly because everybody here at Mainstay enjoys seeing me at the office. I have relationships with my friends and everyone else here at Mainstay. I enjoy doing interviews and I just love being part of orientation in meeting new staff or new employees for the office. Everyone here said that I’m great at doing my position and they are glad they hired me as a Peer Advocate. I have been here working for a year and will work for many years to come.

I would love to live independently in my own apartment and have a family of my own in the future. In the future, I see myself being married and still having a position here at Mainstay. I also love being friends with the different residents here at Mainstay and hanging out doing stuff with them outside in the community.