Imagine living in a constant state of hunger. A grumbling stomach, a desire for a nice, warm meal. This is reality for millions worldwide, but what about those who eat nutritious meals a few times a day? For some, even that isn’t enough. Prader-Willi Syndrome makes that reality different. An abnormality in a person’s 15th chromosome leads to the disorder, which means reality is a constant state of hunger.
Prader-Willi Syndrome causes this hunger, but it comes with an added twist: a drastically lower-than-average metabolism. Together, the two symptoms make it difficult for a person with the syndrome to maintain a healthy weight.
Childhood obesity is a hot topic, and certainly many people jump to conclusions about the family of a child who struggles with obesity. It is no secret that obese children are the subject of teasing and bullying among their peers, and even draw stares from adults in public. For Lisa Lamb and her family, childhood obesity is an enemy that will be hard to keep at bay.
Lamb recently discovered that her young daughter, Makenna, suffers from Prader-Willi Syndrome. With the diagnosis came an impressive resolve to keep the whole family healthy, while helping to keep obesity and its complications from striking Makenna.
“If Makenna is not on a low calorie diet and watched around food, she could eat and eat, causing stomach issues that could lead to hospitalization,” says Lamb. In some extreme cases, though they are rare, this can even lead to death. “There may be a time when the pantry and refrigerator are locked, which will help ease anxieties she may be feeling along with us knowing she is safe from over-eating. We will plan out meals and snacks, along with the times they are eaten,” she says.
Even while faced with these challenges, Lamb and her family are optimistic. Both she and her husband are enthusiastic about nutrition and healthily lifestyles, and they are facing Makenna’s challenge head-on.
“I want Makenna to grow up with the understanding that food is not the enemy and being
active is not a chore. Our experiences with her in the kitchen will be educational, and daily activity will not be boring and routine,” explains Lamb.
The family is committed to staying active and eating healthy meals. They focus on meals that pack the most nutrition into the lowest number of calories. It can be hard to stick to, and certainly there are temptations all around, but this a lifestyle for the Lamb family, and it is one that many people want to stick to.
Anyone wishing to keep up with the Lamb family can follow Lisa on Twitter at @LisaLambPWS. “I hope that my facebook page, Staying Healthy when Hunger Strikes, will help people make better choices. I hope that by raising awareness we will soon find a cure and those living with PWS will no longer be hungry,” says Lamb.
We’re all rooting for the Lamb family, and we are proud to support them on their journey.
Do you or someone you know live with Prader-Willi Syndrome? Tell us about your challenges and triumphs by leaving a comment below!