Coping & Support
Prader-Willi Syndrome is considered one of the most difficult of genetic disorders for parents and caregivers to deal with. Even in the womb pregnancies can go undetected until the second trimester, due to the hypotonia that is one of the hallmarks of the condition. When they are first born, babies with PWS very commonly exhibit failure-to-thrive syndrome. Without the strength to suck and swallow, they have a very difficult time gaining weight; yet later, in a stunning reversal of misfortune, not only can they eat, but they become incapable of feeling sated, and are hounded by a constant, driving hunger which, combined with a slow metabolism, means that they will gain weight precipitously unless they are kept to a diet that allows only 40 to 50 per cent of the norm – constant hunger on a starvation diet! Food needs to be locked up and a strong feeding routine needs to be established.
In addition to that, there is a host of other problems associated with Prader-Willi Syndrome that present constant challenges to parents, siblings, and other caretakers. Cognitive impairment, debilitating scoliosis, obsessive-compulsive behavior, strabismus, skin-picking, anxiety, and significant emotional behaviors demand constant supervision and adjustment, and are always testing one’s patience and understanding.
Luckily, as more and more becomes known about Prader-Willi syndrome, there is a better understanding of how to deal with the many difficult issues it presents, and hope for our loved ones. There are local support groups as well as state, national, and international organizations that can provide information and assistance.
For California residents the Prader-Willi California Foundation is a wonderful resource, and you can find support groups for different areas on their website at http://www.pwcf.org/pages/sg.htm
The national Prader-Willi Syndrome Association is also an excellent resource, and they have information on support groups in other states at http://www.pwsausa.org/support/index.htm