Monday, August 15, 2011

Interview with Vanessa

One of the people I have had the pleasure to "meet" via Facebook is Vanessa, a 22-year-old (I always think she's older since she's often the voice of wisdom!) woman living in Maine. She is hilarious, kind, and very friendly. And she has PWS.


I love the perspectives that Vanessa has to offer and wanted to share those with you. So here are questions and answers from our "interview" for your reading pleasure!

Tell us a little about who you are!
My Name is Vanessa, I was born on 11/13/88 & weighed 5lbs 13 0z.
& very floppy, but it wasn't til I was about 3 1/2 that I was Diagnosed with Prader Willi Syndrome. It brings alot of Challenges but now 22 doesn't changed the wonderful person that I am and I currently live in Maine & have all my life.

What are some of your favorite things to do?
I Love to go for my walks I take everyday, I enjoy listening to music so when I leave for my walks or Tryke rides I always take my Ipod with me I love my walks because it gives me a bit of alone time to myself. I am an Avid Jigzaw puzzle fanatic my room is full of them I've l loved Building them since I was little. I love spending time with my family & friends though things may get frustrating at times they mean the world to me & I love them

What are some of your favorite things to do?
I Love my summer Camp, I've been attending Pine Tree Camp for 6 years now looking forward to my 7th summer on North Pond I enjoy Camp because It is the one place where I am not limited to what I can do and Staff are not judgemental I participate in all activities with my fellow camper friends. which means that when I am there I truly have no barriers & I am allowed to eat the same as everyone else which gives me a little bit of freedom that I don't usually have on a daily basis. I also like causing trouble at camp as in pulling pranks & have successfully earned the nickname" Evil Genius" (E.G.) it's a truly beautiful place & no one gets left behind

How do you think PWS has made you who you are?
I think PWS has made me who I am because it has allowed me to teach my Family to take things slowly & have Patience. due to the challenges it has presented. It has taught me to overcome so many obstacles that were put in my way to my own unique abilitly & best of my Knowledge. & it has allowed me to teach others that just because I have PWS doesn't mean you shouldn't Play talk to be friends with or get to know me for who I am. but most of all it has let me show others that Prader Willi Syndrome Doesn't define me it's just part of who I am

What's the hardest thing about PWS for you?
I would say the hardest thing about PWS for me is the Food issues & my back hurting due to scoliosis. I hate not feeling full, & there are some days I wish I could. It's hard feeling hungry all the time without ever feeling the sensation that I am full. I often wonder what it is like to have a normal working Hypothalymus without the flaw & it is very difficult to completely swallow the fact that without a cure that feeling will never go away, there is a saying were some have said that a person has a Bottomless pit. Well it is extremely hard to have a bottomless pit that I want to use but can't. I don't dislike my diet it just stinks that I am limited so much when there are so many things that I want but cannot have. It hurts not to be able to grab a snack or something to eat when I want it. & I hate when meal times are pushed ahead later because my tummy starts "talking" to me and won't stop
Even though I am intelligent the feeling is still there & it always will be & it is very hard to cope with that insatiable feeling because the typical person would feel full but I do not. also due to the food issues I probably never will be able to obtain my drivers liscense which makes me upset because all my siblings have theirs now I guess it just makes me feel left out that I am excluded from that experience & than there's my back I have to exercise alot just to keep healthy but having scoliosis on top of that is painful I am on medication for it but there are somedays where it hurts alot & I just end up relaxing because sometimes just walking alone bothers my back So scoliosis & Food to me only makes a recipe for disaster so I would say that is the hardest thing for me.

What advice to you have to families with younger children with PWS?
When I was younger I always ate at the table with everyone I don't Know how all of you handle meal times with your kiddos but when my siblings learned that I would eat anything that was put in front of me & Mom had cooked something they "hated" or didn't want they waited for mom/dad to leave the room & they gave what they didn't like to me rather than throwing it away because they knew I wouldn't say no.. Not that it happens with you Guys I just wanted to warn you that it happened to me & could happen to your kiddo's too but now I like to eat alot in my room unless it is a holiday because I like to watch T.V. & watch movies on my Computer

Anything else you want people to know about you or about PWS?
I am currently 22 years old, I will be 23 in November
& I still live at home. PWS can be tricky but if you are/were lucky enough to be blessed with someone who is affect it is sooo Worth it
I've taught my family so much that most others probably would have taken for Granted

Thank you, Vanessa! Vanessa also said she wants everyone to know that if you would like to contact her, let me know!

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