I was asked a question on the onelist about what the word "cure" means in the context of PWS. I wrote the following response and thought I would post it here in case it interested anyone. As always, it's simply my take on things. And, as always, since it's from me and about a topic feel strongly about, it's long. Feel free to delete now, or proceed at your own risk. 🙂
You'll be sorry you asked me a question like this since I'll probably give you such a long answer here. I think it's obvious that I was meant for essays, not email! In my next life, I'll learn to be brief. Unfortunately for you, you've got to abide with me in this life. 🙂
Some people hesitate to use the "c" word because the only meaning it has been given is one that seems unrealistic. I'm neither a scientist or a doctor, just a mom, but I'll tell you what it means to me. For the record, when I use the word "child," I am referring to one of any age. Poor Erin! When she is 90 and I am 130, she'll still be my "child."
In a perfect world, a cure for PWS would immediately banish it to the medical history books along with the black plague and leprosy. Since our children already have it hard-wired into their systems, it seems that dream will be one that can more likely be realized by the yet unborn. I believe with all my heart that that day will come and for the sakes of all the children and families who will be spared the struggle and heartbreak that so many of us have gone through, that day can't come soon enough. I would love to live long enough to see that, but I'll settle for living long enough to take care of Erin as long as she needs me. 🙂
For those of us who have children with PWS already, the "cure" is much more likely to look like a package of effective treatments that come as close as possible to making PWS irrelevant in the life of the person with that diagnosis. This package will most likely be different for each person as the way PWS presents in individuals differs widely.
Most of us long for the day when our children's futures will not be threatened by drives that they struggle to control, so the hunger issue is so very important. Many people feel that the discomfort brought on by the hunger is a very significant factor in so many of the other symptoms of PWS–irritability, inflexibility, learning issues, sensory dysfunction, OCD-type issues, etc.–and by diluting the hunger, by making it irrelevant, we can go a long way toward reducing/removing the effect of some/many of the other symptoms.
While they are little, we can artificially keep our children slender on our 700-800 calorie diets, but finding a way to release them from the forces within PWS that drive them to eat would be so much better. With all of the good training we are providing for them, we have much reason to hope that they would carry these incredible nutritional guidelines into adulthood, and why not? I would just like to KNOW that Erin is free to make reasonable choices without both her and those who love her having to panic about every single bite she takes for the rest of her life. That's a goal of mine and one I think is realistic. In time, we'll know.
Could there be more out there than this package of treatments for this current generation? Without hesitation, I can say YES! There well may be fantastic solutions to our issues just waiting to be identified. Medical advances we would never have dreamed of may be closer than we can imagine. But friends, even if not, even if a package of treatments that make PWS irrelevant is the worst case, I can live with that. 🙂 It's worth everything we all put into it to know that we are doing everything we can to work toward that.
Isn't there a risk that we will fail, that we won't find anything to help our children with PWS, that we will have wasted our time? Yes, there's a risk that we could fail to find the answers we so desperately seek (Although from what we've see so far, that's unlikely!), but is it a waste of time? Not on your life! I can think of nothing, no higher goal that my life could have, than to find ways to smooth the path for children as precious as all of ours are. Erin has turned my life inside out and opened my eyes to the world around me that I would have been way too busy to see without her. She has taught me to love in a way I had not known before and changed the way I think, the commitments I make, and the priorities of my life. Anything I do for her pales by comparison to what she has done for me. I thank God for every minute of every day that she has been given to me, and pray for many, many more.
Friends, this is not about supporting one organization over another. This is not about favoring the young over the old. This is about doing whatever we can to find freedom for those we love, for the children who have come straight from our hearts and have changed our lives forever. Do whatever you can, big or little. Do whatever you can, now or later. Do whatever you can with whichever group floats your boat, be it your local support group, FPWR, National or whoever. Join one or join all. Just make up your mind now, here at the beginning of an exciting new year, to include the support of research in your life's plan. If you need/want specific ideas, let me know. I have a plenty of them! 🙂
Whether you're actively supporting research or not, know that our efforts are as much for your children as they are for our own. We all started out with one child in mind–our own, but we soon fell in love with a population of children who have stolen our hearts. We struggle because they struggle. We hurt because they hurt. And we will keep working, as long as it takes, because they need for us to. They cannot do this themselves and they are depending on us to speak for them, to fight for them, to find answers for them. We can't wait for some else to do this for us, so, those of us who feel called to work in this way, are doing just that.
Join with us, pray for us, send us positive energy, and keep your spirits high. Our days require much of us, sometimes more than we think we can bear, but there is much reason to have hope–strengthening, energizing, transforming HOPE!
Together, always together……
your long-winded friend,