The Girl Who Never Feels Full

 

So sad! I can’t imagine how devastating it would be as a mom to get that kind of diagnosis for your child. Things like this are why you shouldn’t judge someone for having an overweight child. You never know what their situation might be or what problems they might have.

- Jill (the other one)

Posted 08/17/09 05:03 PM

 

 

Whoa! Jill, OP, and everyone else, let’s hold the pity. I’ve worked with a number of individuals with Prader Willi, and they lead full and fulfilling lives. It’s not “devastating.” Devastating is learning you’ve given birth to a child with an unsurvivable trisomy, and any life support will only lengthen the duration of the unbearable pain that they undoubtedly experience. Prader Willi impacts many dimensions of the lives of people who have it and the people who love them, but it is not a pitiable condition. They often have perfectly normal IQ’s, generally surmountable learning challenges, and are often happy, good-natured individuals. They may need attentive diet plans and eating strategies, but that doesn’t mean that they need our pity. “We soon hope [a cure] will be found” is also a great disservice to people with genetic conditions. The only way any genetic disease can ever be cured is by gene therapy, which will require a lot of research before it’s feasible. Even then, it’s far more likely that gene therapy will be used to ensure that carriers of the mutation are given therapy before conceiving their own children. The only strategy for people who already have the disease would be to continually give patients the hormone they cannot produce in order to mimic the effect, but that’s no more a cure than insulin is for diabetes. Prader Willi is not much different than Down’s Syndrome or autism, and shares with those conditions a growing contingent of individuals and families that would like all this cure talk and pity stuff to go the way of terms like “crippled” and “invalid.” Modern medicine is great, but “cures” will likely benefit the next generation, not patients who already have the disease. New treatment strategies are also great. But the greatest challenge people with disabilities often face is not their disabilities, it’s a society and culture that approaches them with pity, expects them to be devastated, and then does so little to treat them like human beings. What is the point of this post, if not this? Where’s the human side, because as I read it, it’s only fear and pity-mongering about the disease. What about cognitive behavioral therapy, diet plans… there’s plenty to write about that would bring a human dimension to this.

- Nick

Posted 08/17/09 10:09 PM

 

 

I don’t believe it’s incurable. I had these same exact symptoms for many years. Always, always hungry, never feeling full, an insatiable appetite with weight gain. And always thinking about food. I found out I had celiac disease, which is an inability to digest gluten (basically wheat, which is in most processed foods!). It wasn’t “all in my head”, as I’d been misdiagnosed and medicated for years earlier. Once on the gluten-free diet, the cravings disappeared, and I finally felt full after a decent sized meal. Cured without any prescription drugs or continued hospitalization. She should be checked for celiac disease, or research the diet and try it. It’s grossly undiagnosed likely in part because it’s curable. But it’s also not easy to get medically proven - because the diagnostics haven’t been perfected.

- Andrea

Posted 08/18/09 03:23 AM

 

 

Thank you, Nick. Andrea, I’m glad you found out your illness, but this girl does not have celiac. That’s ruled out because she DOES have a different, easily confirmed syndrome.

- Uly

Posted 08/18/09 10:35 AM