A Self Advocate s Perspective: Medical Issues Affecting People with Down Syndrome. Date: March 21, 2014

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1 A Self Advocate s Perspective: Medical Issues Affecting People with Down Syndrome Date: March 21, 2014 Presenter: Ben Majewski 1

2 Hi, I am Ben Majewski Thank you for this opportunity to talk today. I work at the Massachusetts General Hospital in Boston in the Down Syndrome Program. My job is Resource Specialist. 2

3 Our clinic sees patients of all ages with Down syndrome. I work with the Children and Young Adult Program. Here is a picture of my team and our jobs at MGH. 3

4 MassGeneral Hospital Down Syndrome Program 4

5 Allie Schwartz, MD Co-Director Brian Skotko, MD, MPP Co-Director Tomi L. Toler, MS, CGC Program Coordinator Benjamin Majewski Resource Specialist Jessica McCannon, MD Jose Florez, MD, PhD Caitlin Woglom, RD, LDN Helen Weiner, MS, LICSW Physician Physician Clinical Nutritionist Social Worker 5

6 We have a process for patients who come to visit us. Our service coordinator, Sandy, checks them in. I greet the family and bring them to their first appointment. Then the Doctor checks them out and refers them to other specialists. 6

7 Helen, our social worker, also talks to the family about social issues and community resources. I meet with the family with Tomi, our program coordinator and Christiane, our research assistant. 7

8 My job is to talk to the families on different topics related to Down syndrome. I use an ipad to give presentations I talk about Celiac disease, sleep apnea, hearing loss and other resources. 8

9 It s easy for me to talk about these topics because I have sleep apnea, celiac disease and hearing loss. The families like to hear from me because I can relate to them and their children. I also talk about my life experiences. 9

10 I talk about independent living I just moved into a group home in February. I talk about being active skiing, golfing and playing sports. I also talk about volunteering in the community. I help out at a women s shelter. 10

11 The shelter is called Rosie s Place. I help cook and serve dinner once a month. Another part of my job is visiting patients who have Down syndrome who are staying in the hospital. I go with the doctors and one of our social workers. 11

12 Patients and families like to hear what I have to say because its different and real. Families like hearing me talk about things they are concerned about. Sometimes they even ask me questions about my girl friend Beth, here is a picture of us. 12

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14 I think it is important to hire self-advocates to work in Down syndrome programs. Patients can see them as role models. Parents can see, that even though their child has medical issues, they can have a bright future like me. 14

15 To the people with Down Syndrome, Don t let your medical issues or having Down Syndrome slow you down! Go for your dreams! 15

16 As a young adult with Down syndrome, I think sleep apnea and celiac disease are two common and big issues. Many people with Down syndrome don t know they have these issues. 16

17 Doctors should check people with Down syndrome for both sleep apnea and celiac disease. If you don t treat these issues you can have problems. If you have celiac disease and eat gluten you get sick. 17

18 If you don t know you have sleep apnea you don t sleep well and are tired during the day. I try to use a CPAP machine to help me with sleep apnea. But it s hard and I struggle with it. 18

19 Hearing loss is another common issue. I wear a hearing aid. If I can t hear well, I can t communicate with people or do my job well. That can make you feel stressed and frustrated. 19

20 Growing up with Down syndrome can mean that some people look at you differently. But you can do a lot of the same things other people can do. It s important to stay healthy so you can be successful. 20

21 I am fortunate to have great co-workers at Mass General Hospital. They know a lot about medical issues and taking care of the whole person. They love their jobs and so do I. 21

22 If you want to follow our clinic check us out. We have a webpage Facebook page And Twitter 22

23 Web page: 23

24 Facebook: 24

25 Twitter: twitter.com/mghdownsyndrome 25

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27 I also have two other jobs that I want to mention. I work as a busboy at an Irish pub called O Hara s. My third job is working on the grounds crew for the World Champion Boston Red Sox. 27

28 Go Sox! And thank you for listening. 28

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