Make Prader-Willi Syndrome an Automatic Disability in the State of Maryland
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Prader-Willi Syndrome is a rare genetic disorder that affects approximately 1 in 15,000 live births. With PWS comes a lot of health problems and difficulties. The main aspect of PWS is the insatiable appetite. Meaning they never feel full after eating no matter how much they eat. Imagine a time you felt like you were starving. It physically hurt, didn't it? That's how our kids feel 24/7 with no relief. No, appetite suppressants don't work. No, there is currently no medication that can help with the hunger. Obesity is common and as we all know, obesity has it's own complications. People with PWS are prone to scoliosis, strabismus, sleep apnea, gastrointestinal issues, psychosis, OCD, anxiety, lower IQ's, learning disabilities, autism and/or autism-like characteristics, speech issues, and many more. They have an unusually high pain tolerance and most do not have the ability to vomit. They also do not have the average body temperature. A fever in someone with PWS may he 98.6 degrees. In the event of bowel obstruction or stomach rupture, it would most likely be life ending because they do not present the same symptoms as you or I.
People with PWS see many doctors and specialists. Many travel to Florida where there is a renowned PWS specialist. Our services and help are very limited across the country. Our kids need speech therapy, occupational therapy, and physical therapy. Our kids need medications to help with symptoms of PWS. One medication in particular is human growth hormones. It helps with function, growth, and muscle strength. That medication for someone who has no health insurance can cost up to $45,000 per year. Maybe even more.
I can, and want to keep writing about PWS for educational purposes, but I think you have gotten the gist here. Families here in Maryland, and across the world, are struggling with their PWS children and medical costs. The only 2 hospitals in the United States that had inpatient units for PWS, have shut down. I am fighting for the state of Maryland to make a legal change that anyone who has a diagnosis of Prader-Willi Syndrome, be considered disabled. We need help with out kids financially and medically. Our resources are slim and keep getting smaller. Our kids already have shorter life spans, and if we can't get help, they will die before their time. Please.
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