In the last issue of the Newsletter, the Spring/Summer issue, I mentioned I would print Samantha Whitney's talk in this issue. Since she shared so candidly with us as a young adult with MSUD, her speech fit quite well in this Sharing Section. She spoke following her mother's speech at Symposium '96 during the presentation of "International Aspects of MSUD."
My name is Samantha Whitney and I'm from a town called Nowra in Australia. I would like to thank you for inviting me here to America. I've always wanted to meet people with the same illness or condition as me and now I have that chance - so thank you.
I'm twenty years old and I've had maple syrup since I was one week old. I'll talk about how I feel about the condition. Sometimes it really gets me down because I have to drink this horrible formula. I'm wondering if any of you with MSUD have the same feeling about your formula. I will have to get around to know some of you, and maybe I could try some of your formula. Mine comes from England and is called Maximaid.
It also gets me down how you have to stick to a very strict low protein diet as most of you with MSUD can relate to. I don't know about you, but when I'm feeling sick, the last thing I want is my formula. It makes me feel even worse. I have had to sometimes boost it up a little, and it just tastes horrible!
Would most of you with MSUD agree that the low protein diet is plain and boring and . . . yuck? That is what I think. Sometimes I would just like to have a meat pie or a hamburger. But I know I can't, as it would probably kill me. I mean you probably feel like that every now and again. I don't know if any of you with MSUD feel the same when you're asked why you can't eat meat. I know I hate it when you have to go and take your formula and explain why you can't eat meat when you're staying at someone's house, like a friend's house.
I also dislike the fact that there is no one else to talk to about how I feel with this condition and there is no support in Australia for MSUD. It is like no one knows what you are going through or what it is like to have this condition.
The other thing I hate or dislike - and I'm sure some of you with MSUD can relate to this feeling - is feeling nauseated and not being able to be sick or being sick and not being able to stop being sick. I really hate that. I haven't had as many hospital stays as I did when I was younger, however, I still get hospitalized every now and again.
I know I haven't said anything positive about the condition, as there really isn't anything positive about it. The only positive thing is getting the chance to come over here to America and meet other maple syrup people the same as me, which I really love. I mean it is great to get around and talk to people who have got the same thing as I do. It is just really good.
I'm counting on doing a two year course at TAFE called Youth Diploma. It is a full course and I love it. It is something I really want to do. I believe here in America you call it college, whereas we call it TAFE in Australia. I have a great set of friends at TAFE who accept me for who I am, and it is really good. They don't look at me as being different, so I'm really happy about that.
And I guess when I look into the future I see myself married and hopefully with kids and happy. However, there is always hope in the back of my mind that there will be a cure one day for all the maple syrup people. I would like to thank you for your time and thank you again for inviting us to America.