By Janet Favorite
People are often surprised to hear that there is a syndrome that mimics food addiction. You may not have heard of it. It is called Prader-Willi Syndrome. If I were to say that some people lock up food to keep it away from their children, you might be very surprised and shocked.As with all syndromes not everyone is affected in the same way, but most are fixated on food. They can also have low muscle tone, cognitive impairment, perseveration, an inability to let things go, slow metabolism, and short stature.
Only about one in 20,000 people are born with Prader-Willi. When it happened to our son 30 years ago, we were more surprised than anyone. Through the years we became educated. When we first learned about the syndrome, most people died at 40 from morbid obesity. Death is now most often caused by people eating themselves to death. Their intestines become blocked by too much food and infections occur.
In order to be available for numerous medical appointments I ran a home-based catering company. Our son never “stole” food as many of the people affected by the syndrome do but being around unsecured food caused anxiety. We were made aware of this after many years of struggle.
In the early years I did not seek out too much information. We attended a Clinic at Gillette Hospital in St. Paul. Our endocrinologists saw us every three months and kept us informed. If I was aware of all the complications this syndrome involves, I don’t know that I would have been able to get out of bed in the morning.
Today, there is an abundance of medical information on the internet and information is shared through Facebook groups for parents whose children have the syndrome. While this is a lovely way of getting support, many of the posts are asking for medical advice, not coping methods. Many of the posts give antidotal information that is not scientifically proven.
In an effort to share how people can cope with an on-going, life-threatening situation I wrote a book, Raising Robert, about our family’s story.
I found support to be crucial to coping. It is not equally available to all of us, but the key is asking for it and accepting help when it is offered. Often my offers of help are met with “Oh, you don’t (want, need) to do that.” I asked my minister for spiritual counseling. I asked my Mom and sister for respite care. I asked my friends for babysitting help. Organizations, such as Courage Center, therapeutic horseback riding programs, and Special Olympics, were asked for help with scholarship money for their programs.
Our son skies, rides horses, swims, runs 5K races, and works in the community. These are all things that our family would have never been able to accomplish on our own. None of us would have had the patience or ability to accomplish all this. When I see my son, who was barely able to walk in ski boots, flying down the hill between two men supporting a pole and guiding his turns, my heart is filled with joy!
All of this was accomplished because we asked for and accepted help. You may hear some “No, that’s not possible right now.” Keep asking, it may be possible in the future. I have found that helping other people makes me feel good. Asking for help keeps you humble and connected. We are grateful for all the help we have received and all the help we continue to receive.
Janet Favorite is a life long resident of St. Paul, Minnesota. She is proud of her thirty-seven-year marriage, and her two children, one who has Prader-Willi syndrome. She enjoys being outdoors with horses, dogs, and gardening. She swims often and boasts that she swam in two Great Lakes, three oceans, and three seas. She feels her outdoor adventures replenish spiritual energy, enabling her to cope with life’s challenges.
Her first book, Raising Robert, explores the emotional impacts that families experience when they parent a Special needs child with Prader-Willi Syndrome. It offers hope and practial advice for newly diagnosed children.