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My story living with a disability: Prader-Willi syndrome

Date Posted: Wednesday, 06 May 2015 09:17
Posted By: Nadia Pocock

Our blogger this month is Kate who talks about her life and experiences living with the disability, Prader-Willi syndrome.

Kate sitting in her backyard

Prader-Willi syndrome is a genetic disability affecting chromosome 15. Not all people with Prader-Willi syndrome will have the same characteristics, however some traits can include chronic hunger and an obsession with food, obesity, poor muscle tone, learning difficulties, and a short stature.


It was hard work for my parents when I was young. Having a child with special needs was a bit daunting at times, and it was an emotional strain for them to try and fit me into a “normal life” in “normal society”.

I was basically a loner at school, I kept to myself. At lunch instead of being outside with the other kids, I would go to the library and read a book.

I loved learning and I loved school, but I hated the kids there.  I had one friend right through primary school who would always stick up for me. She would say to the others, “Kate’s just like us, treat her with respect. Why don’t you just get to know the person on the inside?” We’re still friends to this day!

In primary school, I began to put on weight and the names I was called I don’t want to repeat. I coped with the bullying through food, comfort food, meaning not so good food. Chocolate bars, doughnuts, and all that kind of thing. 

A lot of teenagers these days commit suicide because of bullying. I have tried that. When it got very difficult I thought, can I do this? Can I end it? I was in grade 5. Year 5 and 6 was when the bullying got bad, I was preadolescent and my weight had become more noticeable. 

Growing up there weren’t many treatment options, so I just had to try really hard not to eat, and to exercise as much as I could.

Food is always hard for me. People with Prader-Willi syndrome have an unsatisfied hunger meaning they always feel hungry. They don’t have the signal that comes from the brain, the lightbulb going on saying, hey you’re full!

It’s also much harder for people with Prader-Willi syndrome to lose weight as we have low muscle tone, so it’s difficult to move around and get our muscles to work.

Growing up, my brother and sister had to be ok living in a house where there were no chocolate bars, biscuits, or sweets because I couldn’t have them, or have them around me.

At times people with Prader-Willi syndrome can even become desperate for food.

I have eaten out of bins before. And being around food in shopping centres is very hard. I have to admit, I have stolen food from shops when I didn’t have any money, but thankfully people have been understanding at those times.

Before I moved into my current home, I lived alone which meant I had a lot of time, time to go to the neighbours to get extra food, or down to the shops. It was at this stage in my life that my weight increased, and my health started to suffer. I then decided I had to do something or otherwise I would end up being 6 feet under. 

This is when I decided to move to a group home run by House with No Steps to give me more support. Since moving in two years ago, I have lost 45kgs. Each day I do cycling in the morning, cycling in the afternoon, as well as walking throughout the day. 

I now have carers that manage my meals for me. If the temptation is taken away, it’s much easier. I don’t go into the kitchen, it’s a no go zone. I need this structure around food, to live in an environment where there is no temptation. 

It is a lot harder to live with Prader-Willi syndrome than people realise. The food and weight is hard, but it’s also hard to make friends, and to keep friends. 

I hope one day to be able to go to schools and share my experiences with the students to raise awareness of Prader-Willi syndrome and the damage that bullying can cause. 

A lot of people who have Prader-Willi syndrome do not feel comfortable talking about it, but I want to share my experiences so people can understand. People should never judge a book by its cover, but instead get to know the person on the inside.

If you need to talk to someone about a crisis in your life, please consider calling Lifeline on 13 11 14, beyondblue on 1300 22 4636, or the Kids Helpline on 1800 55 1800.


Check out our other blogs

Myths about Prader-Willi syndrome

10 things not to say to someone with a disability 

Bipolar: life on the North and South poles

Find out more about disability services at House with No Steps

Comments

Posted By:

Heather Simpson

Date

Thursday, 12 May 2016 15:23

Hi Kate, thankyou so much for sharing your story with us, I can only imagine how hard it was for you to speak so honestly about Prader Willi, you are a courage's and inspiring young lady.

Posted By:

Sharon

Date

Thursday, 03 March 2016 11:07

Hi Kate! Great job with your story, and your continued success. My son Derek is 26 and has PWS as well. I admire the strength and grace of your both, living with something so difficult that most other folks will never understand. Keep up the great work!

Sharon

Posted By:

Ashley

Date

Tuesday, 19 January 2016 09:55

Hi my name is ashley and I have PWS and somehow I would like to write to you

Posted By:

Abby

Date

Wednesday, 02 December 2015 12:44

Kate, you are definitely an inspiration to others who have PWS or a family member or school teacher because you have been able to talk about what it's like to live with the syndrome. I think your parents must be amazing and have obviously put an enormous amount of work into encouraging you to grow up to be such a well-rounded adult who has found a way to live with a permanent disability and is willing to offer your insights to others. Well done and I hope lots of opportunities come for you to be able to speak publicly about your life.

Posted By:

House with No Steps

Date

Tuesday, 01 December 2015 21:00

Hi Julius,

We offer some healthy living tips including advice around how to get active and eat a balance diet on our wellbeing hub, check it out at https://hwns.myspringday.com.au/healthy-lifestyle

Best of luck,

The House with No Steps team

Posted By:

Rebecca

Date

Tuesday, 01 December 2015 17:52

Thank you so much for sharing your story kate. As a mum of an 18 month old with PWS i really appreciate your honesty and courage. You are creating so much understanding and awareness by writing this. Thank you

Posted By:

Julius Moreno

Date

Tuesday, 01 December 2015 09:32

I'm trying to loose weight can anybody help me

Posted By:

Desiree

Date

Tuesday, 01 December 2015 08:26

Hi Kate,
Thank you so much for sharing your story!! It helps understanding what others go through. I am thankful you are able to live in such a great place. I pray you are able to share your story more!

Posted By:

Jessica

Date

Tuesday, 01 December 2015 05:44

Dear Kate,
You are beautiful and brave to share your story. I have a son Ryan, age 12, with PWS. You have more strength and wisdom than you know. You inspire me. Thank you.

Posted By:

Janis Williams

Date

Tuesday, 01 December 2015 01:17

Thanks for sharing your story. My daught Audrianna is 14 and has PWS. Your story helped me realize how she feels.

Posted By:

Joy Martin

Date

Monday, 30 November 2015 13:21

Congratulations Kate, for your strength and purpose. So informative. And inspiring. My cousin's son has pws, and yes, it's different for many. But the positives are his beautiful personality and the love he gives. Bless you!

Posted By:

Sharon

Date

Monday, 30 November 2015 10:37

Hi Kate! Thanks so much for sharing your story! How beautifully you told the story of living with PWS. My son Derek also has PWS, so we know first hand how difficult living with it can be. Your positive outlook and dedication makes you a true inspiration. Thank you, and keep up the great work!

Posted By:

Jen

Date

Friday, 20 November 2015 18:34

My daughter had PWS. So hard to read your story but so helpful too. Thankyou for sharing. X

Posted By:

adam

Date

Wednesday, 21 October 2015 21:58

Kate, your ability to accept the cards you've been dealt with and keep on living your life to the best of your ability is truly inspiring.
I've known you a long time and know the struggles your syndrome has presented you with and its fantastic to see that you've risen above it all and keep a sense of humour whilst doing so.
You've been lucky to have such caring parents and support structure but at the end of the day, you are the one who has remained strong and tenacious and I really admire you.
Love Adam

Posted By:

crystalhooshnam

Date

Thursday, 17 September 2015 07:22

my father don't understand nothing about the syndrom of pws that i have katie do u have any suggesting for me to help my father to understand my condition that i have

Posted By:

Rhonda

Date

Sunday, 24 May 2015 06:39

Thankyou for sharing your journey Kate. This world is a better place for people who become vulnerable & bare their soul. It helps people to open their minds, open their hearts & create an opportunity for compassion & love for all human beings.
We need more stories like yours!!!! How inspiring you are & I wish for you a truly beautiful life in this magical world. xo

Posted By:

Carla

Date

Friday, 22 May 2015 03:41

What an amazing girl, you are, Kate! Thank you for sharing your story! Personal accounts like yours definitely help understand PWS a great deal better. Congratulations on all your accomplishments while living with PWS, and Best wishes for your continuous success!

Posted By:

Sophie

Date

Thursday, 21 May 2015 18:41

Thank you for sharing your story. My son is 4 years old and has PWS so it is great to hear from an adult with the syndrome. I hope that some day my son will be able to describe how it feels for him as eloquently as you have written here!

Posted By:

Karen Major

Date

Saturday, 09 May 2015 22:10

Inspiring. It is great that you have shared your life story and experiences with people. I hope you continue to pursue this and can advocate for anti-bullying in schools and society.

Posted By:

Christine

Date

Friday, 08 May 2015 07:26

I feel so happy that you have made this "new" life for yourself Kate. You should feel very proud of your achievements. Thank you for sharing your story and making me aware of PWS. I hope you and your friend are still in touch and share many happy times. I'm sending you every best wish for your future.

Posted By:

Alex

Date

Friday, 08 May 2015 05:01

Hi Kate, I really enjoyed reading your inspirational story. I had never heard of PWS before and your story has opened my eyes to the struggles that people may have with this syndrome. What a strong and courageous woman you are for survivng the difficult years at school and for asking for help and taking it by moving into your share home. We all need help and support to walk through life and it warms my heart to hear that this great support is out there. Best wishes and love for your journey.

Posted By:

Lyn

Date

Thursday, 07 May 2015 22:40

Hello Kate. Thanks for sharing your story. it will help to spread knowledge and understanding to those of us who had not heard of PWS before. Lyn

Posted By:

Annie

Date

Thursday, 07 May 2015 22:32

Hi Kate, it is nice to meet you and read your story. You are an inspirational woman.

Posted By:

FIona

Date

Wednesday, 06 May 2015 23:14

Your a beautiful woman inside AND out. Don't let ANYONE tell you otherwise.

Posted By:

Cathy

Date

Wednesday, 06 May 2015 21:56

What a strong, wonderful person you are. Thank you for sharing your story. You really are making a difference by being so honest and open. I wish you all the luck in the world for your future.

Posted By:

Gadjet

Date

Wednesday, 06 May 2015 20:35

Hi Kate, thank you for letting us into your world & helping us to understand a little more about PWS. Your story is inspiring & well written & you have done so well since you have moved into the group home. You should be so proud of yourself & your achievements & how far you have come.
It is so good that you have a great family & good friend to support you on your journey through life . I work in a group home & it is the most rewarding job to have & so is working with young people like you Kate.
Keep Smiling

Posted By:

Kerry

Date

Wednesday, 06 May 2015 20:32

What an amazing lady. Facing life's challenges, recognising them and meeting them head-on. Beautiful, courageous, intelligent, and inspirational.

Posted By:

Deborah

Date

Wednesday, 06 May 2015 15:13

Hi Kate, thank you for sharing your story, it could be a huge help to other people with PWS, but also I think the way you have written your story, will also help other people to understand that the hunger you describe is not a choice, the way people try to get to food is not a choice, it is part of the disability. I admire you for taking the hard decision to get help and support to manage this. Regards, Deborah

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