NJ Rare Diseases - My9 New Jersey

NJ Rare Diseases

Posted: Updated:
Glen Ridge, New Jersey (My9NJ) - Finding out that your child has been diagnosed with a disease is devastating. Oftentimes there are support groups offered that help you connect with people who may be going through the same situation as you.

However, imagine that your child is diagnosed with an extremely rare disease that is found in fewer than 1 in 200,000 Americans nationwide, many of those families can feel completely alone. That is how Julie Raskin felt when she found out that her son Ben was diagnosed with congenital hyperinsulinism, a rare disease that causes the overproduction of insulin in newborn babies.

Ben is now a 17-year old senior at Glen Ridge High School who still suffers the consequences of this rare condition. This includes suffering from epilepsy, being legally blind and checking his insulin multiple times a day after having his pancreas removed as part of his treatment.

“Now I’m a type 1 diabetic. And I check (my sugar) on average like at least four times a day. Once before breakfast, once before lunch, once at dinner and once before bed,” he said.

Rare diseases impact between 25 and 30 million patients nationwide and Julie explained how decisions by the state and federal government greatly determine how these children will be treated.

“Insurance is very much determined by the state that you live in and now with the affordable care act, each state is implementing its own state insurance exchanges. So the kind of plan you have, what’s in the plan, is kind of determined by the state,” she said.

Julie has even addressed the senate health committee to get help with her son’s problem through the organization NJ Rare. Through her involvement with NJ Rare, Julie hopes to strengthen the profile of rare diseases and give a voice to those with a rare condition.

“Here in New Jersey we have a special kind of mission, I think, for the whole rare disease community of the world,” she said.


Watch Chasing New Jersey weeknights at 10pm on My9 and don’t forget to like us on Facebook!

  • Chasing New JerseyMore>>

  • Are Bergen County Streets The Place For A Military Vehicle?

    Are Bergen County Streets The Place For A Military Vehicle?

    Thursday, July 31 2014 10:10 AM EDT2014-07-31 14:10:36 GMT
    The Bergen County Sheriff’s department is getting an MRAP, or a mine resistant ambush protected vehicle, for their department next month. These vehicles are currently used in Iraq and Afghanistan and its drawn a lot of controversy in Bergen County recently. The county executive doesn't want one. She says these are war vehicles and have no place here.
    The Bergen County Sheriff’s department is getting an MRAP, or a mine resistant ambush protected vehicle, for their department next month. These vehicles are currently used in Iraq and Afghanistan and its drawn a lot of controversy in Bergen County recently. The county executive doesn't want one. She says these are war vehicles and have no place here.
  • Christie Talks Pension Reform Amid Singing Protestors

    Christie Talks Pension Reform Amid Singing Protestors

    Thursday, July 31 2014 10:04 AM EDT2014-07-31 14:04:37 GMT
    Governor Christie was in Belmar yesterday for his latest stop on his “No Pain, No Gain summer conversation tour” and rather than talking exclusively about pension reform, the governor instead opened up talking about bail reform.
    Governor Christie was in Belmar yesterday for his latest stop on his “No Pain, No Gain summer conversation tour” and rather than talking exclusively about pension reform, the governor instead opened up talking about bail reform.
  • Atlantic City’s Struggling Casino Industry

    Atlantic City’s Struggling Casino Industry

    Thursday, July 31 2014 10:02 AM EDT2014-07-31 14:02:05 GMT
    Atlantic City has been struggling. The Showboat and Trump Plaza Casinos are both scheduled to close next month and Mayor Don Guardian says that the city needs to figure out a way to change things if it wants to survive, but he said it’s not dead yet! “So Atlantic City may be 15 years after Vegas and I realized that it’s not all about casinos, it’s about the overall experience of coming to resorts,” he said.
    Atlantic City has been struggling. The Showboat and Trump Plaza Casinos are both scheduled to close next month and Mayor Don Guardian says that the city needs to figure out a way to change things if it wants to survive, but he said it’s not dead yet! “So Atlantic City may be 15 years after Vegas and I realized that it’s not all about casinos, it’s about the overall experience of coming to resorts,” he said.
Powered by WorldNow
Didn't find what you were looking for?
All content © Copyright 2000 - 2014 Fox Television Stations, Inc. and Worldnow. All Rights Reserved.
Privacy Policy | Terms of Service | Ad Choices