IPWSO Conference- A Story From A Self Advocate

To our PWSA (USA) families from the UK,

Tomorrow starts our last day of the international conference in Cambridge, but I did want to let you know that the IPWSO conference hosted by PWSA UK has been a huge success.  There are 33 nations represented here, and when I get back USA, I’ll give you more details of the scientific, care providers, and parents/general conferences.  In the care providers conference, there were 23 nations represented! For now, I would just like to share with you a wonderful writing given to me by a young man who has PWS, Yosuke Ikeda, from Japan. His physician, Dr. Tomoko Hasegawa, had translated it into English for us.

 Janalee Heinemann, MSW

Director of Research & Medical Affairs

PWSA (USA)

Vice President, IPWSO

Message from Yosuke, Self Advocate

My name is Yosuke. I am 21 years old and I study social welfare at the College of Health and Welfare in a University in Japan. I have PWS and am fighting against the devil in PWS.

I have magic words for fighting. I learned them from my best friends grandfather.  Makete oboeru sumou kana.  It means “Failure teaches success.”  Katte kabutono o wo shimeyo.  It means, “Don’t let your guard down even after you’ve won.”  And this,  Naseba naru nasaneba naranu nanigotomo naranu wa hitono nasanu narikeri.  It means, “You can do anything if you try.”  This one is special to me.

These words help me to stop my overeating. Whenever I get “ I want to eat!! I want to eeaaatt!!! “ I remember these magic words which I have written on a card and I am carrying it with me in my bag.

Janalee Heinemann, Director of Research and Medical Affairs for PWSA (USA) with Yosuke Ikeda

And when I walk, I am always conscious of the way I walk. It improves metabolism, and increases perspiration. I have actually lost weight using such a walking method. I showed my father the walking method, and he was glad that it worked on him, too.  Therefore, I believe that the other children with PWS who are having the same trouble can get better.  I am walking with consciousness on my way to and from school, at school, and anywhere.This is how I walk. I follow the rules which I learned from a walking lesson called “ 10 Important Points to Remember for Beautiful and Healthy Walking.”

  1. Not lower your eyes.  (Keep them horizontal.)
  2. Lightly pull up your belly.  (Enhances breasts, raises hips, and tightens waist.)
  3. Raise toes and land on the heels. (Prevents falling.)
  4. Rub your knees together lightly. (Prevents bow-legs)
  5. Stand and walk with vertical balance.  (For a shapely figure)
  6. Basically walk with shoulder-width strides. (For a smart walk).
  7. Use your sole evenly (prevents cold feet and swelling legs)
  8. The three points–the shoulder, the waist, and a knee, should be on a straight line.  (Improves stiff shoulders, back pain, and knee pain.)
  9. Feel the bases of your legs and arms in around your stomach.  (Makes your legs look long.)

My happiest experience in my life was when my teacher said, “Come to my room and consult me whenever you are being bullied” when I was being bullied about my body shape at a high school.

The most painful thing that happened in my life was when I was teased, and was looking down crying and teacher said, “Don’t sleep in class.”

The hardest thing when on a diet is that there are always worries about when my “devil” might come out. For example, I worry that even though I know I will gain weight, I might not be able to stop myself from buying food.

Although it is not easy, I always think about food calories and how I can cut them down. Whenever I am hungry and want to buy food at a supermarket, I have to check labels and make it less than 300 calories.  I am always thinking about it. This is the hardest thing.

When you see a person like me, with same syndrome, and they are about to buy extra food, I would like you to say, “You should stop. If you stop now, you will have a better future.”

Although controlling myself is not easy, it is easier when I have aims and when I am enjoying it, so I would like to think of the ways which I can relax and enjoy myself.

For example, in a Subway Sandwich, there is a service which you can ask for more vegetables with a low calorie sandwich.  I enjoy buying it, together with a zero calorie drink.  Moreover, I enjoy having bony parts of fish (which are called “ara” in Japanese) for dinner so that I can take time in eating them clean with my chopsticks.

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About pwsatoday

PWSA (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.
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