Kate is an adult living with PWS. In this personal blog she writes about what it is like to have PWS and what she wants other people to know about it.
I am writing this article for carers because I have to educate them more on Prader-Willi syndrome. To help them understand Prader-Willi syndrome a lot more, so they can look after their clients with Prader-Willi syndrome a lot better. The clients that have Prader-Willi can live a more active, quality life. Therefore, they will be able to live a lot longer.
Hello, my name is Katherine. I am a 31 year old-female, living with a serious and severe, life-threatening eating disorder condition called Prader-Willi syndrome. It is very hard to live with Prader-Willi syndrome. There is no cure for it yet! However, one day in the future maybe scientific researchers will come up with a cure, or a medication that sends the correct signals message to the brain to tell us that we are full.
It very horrible to live with PWS. I can’t eat foods that are high in fat and high in sugar, like takeaway foods, like Kentucky Fried Chicken and pizza or hamburgers or chocolate and slices. These kinds of food are considered as naughty foods to me. It wouldn’t be very healthy for me to eat, because I can’t burn fat off that easily, like other people can. So that is why it would be very bad for me to eat theses kinds food. The foods that I am able to have are low fat cheeses, low fat milk, and low fat yogurts and fruit and vegetables and diet drinks, which will keep me healthy.
The eating disorder is only one of the conditions, that you can have with Prader-Willi syndrome, the other conditions that you can have are low muscle tone, lack of feeling satisfied, and constant hunger, overeating, mild intellectual impairment, behavioural problems, specific physical features like small hands and feet. We don’t go through normal physical changes like other people go through puberty.
The problems that you can have with PWS include that you can get diabetes, you can become very obese. You can have bone and joint problems and very bad oral hygiene, you can also have sleep disorders, like sleep apnea, The other problems you can have, are being very stubborn, and being very aggressive especially around meal times. And people with PWS can become violent, when they don’t get their own way and also when they don’t get what they want.
In some cases, we can even eat out of garbage bins, to get extra food because we are very hungry. In severe cases we can even steal food from supermarkets. In shopping centres to get extra food, we can even steal money out of people’s purses and wallets. To buy naughty foods that will put the weight back on. That’s why it is so important to have your money, locked up in a safe place.
It is also important to have the fridges, freezers and pantries locked so we can’t get access to extra food and it is a less of a temptation for us. The kindest thing you can do for a person with PWS is not to give food for a reward. But to buy something like movie vouchers instead. Whatever you do in any circumstances, do not give them cash in their hands. Because we would go and buy whatever we like. And it may not be healthy for us to eat. I have a few of these problems but not very many.
I am argumentative at times with my parents, doctors and carers. I am very stubborn most of the time, I do have the eating disorder condition, I do pick my sores on my skin until they bleed. I don’t get physically violent or have the bad behavioural problems, that other Prader-Willi syndrome people have.
I have gone through a lot of rough times in my life, and I have had my fair share of problems in my life. At one stage of my life, I was very big and weighed a staggering 135 kilo. I was very close to death, one step closer to heaven’s doors at one stage of my life. How I got to be this heavy – I have to tell the truth, no matter how disgusting it sounds. I have eaten out of bins, and I have taken money out of people’s wallets and purses so I could buy extra food. I have even gotten to the point of doing something really bad, like shoplifting, stealing food from supermarkets in shopping centres to get food. I have even broken in to my fridge and pantry to get extra food because I was very hungry. I have even eaten the wrong sorts of food, when my mum was diagnosed with breast cancer. That didn’t help me much either, it just made me feel like eating more food. I had to change my life around very quickly or I would have died.
I went on a meal replacement program for five months, I had three milkshakes a day and I was also allowed to have diet jellies. That was all I was able to eat. I had to drink three litres of low-calorie drinks to flush my kidneys out, so I didn’t get kidney problems. I had to have three milkshakes a day for a whole month. but I couldn’t cope just having my three milkshakes a day, I was just feeling too hungry. So Georgina told me I could have two small bowls of non-starchy vegetables as well as having my three milkshakes a day. For the next two months, I stayed on my three milkshakes a day and my two small bowls of non-starchy vegetables, and my two fruits I was able to have.
It was very hard to stick to the strict low-calorie meal replacement program, I started to crave my carbohydrates and my dairy products too. While I was on this low-calorie meal replacement I started to see the results, I was starting to shed the extra kilos I was carrying on my body. I lost 1.5 kilos in a week and 7.5 kilos in a month. So by two months being on the meal replacement program, I lost a staggering 15.5 kilo. I had to do a lot of exercise to take the extra kilos off my body. Then I was able to have one small meal and two chocolate milkshakes, every day for the next four weeks. I lost another 7.5 kilos then I was able to have two small meals and one milkshake a day, I had four weeks left on the meal replacement program. When the five months was up I had lost 26.5 kilos down to 109.9 kilos.
I have managed to keep my weight under control, because my carers make sure they have locked my fridge and pantry up properly before they go home for the day. They also have to follow my menu plan which is stuck on my fridge word for word and measure my food out correctly into the right portions. They make sure I do my exercise every day to keep my weight under control. I also go to work three days a week and that keeps me very busy. So I am not at home sitting down doing nothing all day. I wouldn’t be able to live independently in my own place without the help from my carers.
People that have Prader-Willi syndrome, need order for them to live a healthy active quality life. They need to have their money locked away and their cupboard and fridge and freezer locked. They must follow a very strict calorie controlled diet, they must also do some kind of daily exercise, to keep them healthy and to live a longer life. Otherwise they will eat themselves to death or have other serious health issue like diabetes, obesity and breathing problems, and kidney problems.
People look at us differently and treat us differently because of our size, but we can’t help the way we look. It is the way we were born, people should not stare or treat us differently. They should treat us like normal people in the normal community and treat us as an equal person. Don’t judge a book by its cover, take a chance to get to know the real person inside. It is the person inside that counts. Just give us a chance to get to know us, we are very kind, loving, caring, bubbly people with a sense of humour when you get to know us.