Rare Disease Causes a Desperate Feeling For Food
Hunger...its that uncomfortable feeling you get when you haven't eaten.
But what would happen if you felt hungry all the time?
Even after eating.
One boy knows the feeling all too well.
And its all because he suffers from a rare disease called Prader Willi's syndrome.
1 in 15-thousand people have the disease.
But the symptoms can be severe.
It can cause a sleep disorder, social and behavioral issues along with major weight gain.
While those symptoms can be treated.
Specialists are still struggling to find a cure for their appetite.
"We were told to institutionalize him he wouldn't amount to anything" said Connie Brosam mother of Jacob's Brosam.
Words from her doctor the day she found out her son jacob had Prader Willi's disease.
Jacob's Mom said, "Each meal he's talking about the next meal and what he's going to have and at what time. He is infatuated with time. So he wears a watch. And he know's what time his snacks are."
Three meals and two snacks a day may seem like plenty of food to anybody else but for Jacob its just not enough.
Jacob is always hungry.
Just like others who have been diagnosed with Prader Willi's disease that hunger never goes away.
Dr. Jennifer Miller Pediatric Endocrinologist explained the severity of the disease by saying, "Every parent has their refrigerator locked up, their cabinets locked up or even their whole kitchen locked up because it is the only way to keep them from eating themselves to death."
So a regular kid could just go to the movie theaters and eat a whole bag of gummy bears...But with Jacob's illness he can only eat one.
Dr. Miller explained, "Put a plate, you know like a restaurant filled with all the food you typically get fed at a restaurant and take away about three quarters of it thats how much they are allowed to eat."
Portion control and is vitally important to those struggling with this disease.
Jacob was diagnosed when he was diagnosed when he was just a baby.
Like so many others with Prader Willi's...the beginning can be difficult because the hunger can prove to be too much.
Jacob's mother remembers how, "He would go through purses diaper bags, he was eating non-perishable items such as bugs. Anything he could get his hands on he was doing."
For now Jacob's mom makes sure his meals are on a schedule.
In hopes that one day he will be able to control his hunger by himself.
His mother believes, "God has a plan for him...Our Faith is really strong. So thats what we go on. Right buddy?"
Dr. Miller says researchers are working on a way to curb their appetite.
For Jacob his mom's food schedule is working to keep him from acting on his desire to eat.
But she says it's a daily struggle.
For more information on the disease you can visit https://ufandshands.org/prader-willi-syndrome
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