NJ Rare Diseases - New York News

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>>

  • High Fructose Corn Syrup

    High Fructose Corn Syrup

    Friday, April 18 2014 1:41 PM EDT2014-04-18 17:41:55 GMT
    A sweetener cheaper than sugar but just as sweet is now in many food and drink products at the grocery store.  It's called high fructose corn syrup.  Some nutritionists, like dietician Dawn Sharp, claim it’s pretty bad for you.
    A sweetener cheaper than sugar but just as sweet is now in many food and drink products at the grocery store.  It's called high fructose corn syrup.  Some nutritionists, like dietician Dawn Sharp, claim it’s pretty bad for you.
  • Firefighter accused of driving truck while drunk

    Firefighter accused of driving truck while drunk

    Friday, April 18 2014 1:27 PM EDT2014-04-18 17:27:14 GMT
    The town of Elmwood Park relies on about 75 to 100 volunteer firefighters for emergencies.  Russell Fenn, IV is one of those volunteer firefighters. He was driving the department’s only ladder truck and crashed it into utility poles.  Police charged Fenn with driving under the influence and said that his blood alcohol level was twice the legal limit.
    The town of Elmwood Park relies on about 75 to 100 volunteer firefighters for emergencies.  Russell Fenn, IV is one of those volunteer firefighters. He was driving the department’s only ladder truck and crashed it into utility poles.  Police charged Fenn with driving under the influence and said that his blood alcohol level was twice the legal limit.
  • WWOR's "Chasing New Jersey" Gets State Recognition

    WWOR's "Chasing New Jersey" Gets State Recognition

    Thursday, April 17 2014 3:53 PM EDT2014-04-17 19:53:15 GMT
    Chasing New JerseyChasing New Jersey
    New Jersey’s General Assembly honored WWOR’s Chasing New Jersey on the occasion of its 200th episode, which aired April 11, 2014, TV News Check reported.
    New Jersey’s General Assembly honored WWOR’s Chasing New Jersey on the occasion of its 200th episode, which aired April 11, 2014, TV News Check reported.
  • Local NewsLocal NewsMore>>

  • Skydiver dies after crashing into NJ backyard

    Skydiver dies after crashing into NJ backyard

    Sunday, April 20 2014 10:56 PM EDT2014-04-21 02:56:44 GMT
    New Jersey NewsNew Jersey News
    A 49-year-old sky diver from Brooklyn died after crashing into the backyard of a home in New Jersey. According to officials, Arkady Shenker wore a specialized parachute during the jump. Shenker was known to be an experienced skydiver who had over 300 jumps under his belt.
    A 49-year-old sky diver from Brooklyn died after crashing into the backyard of a home in New Jersey. According to officials, Arkady Shenker wore a specialized parachute during the jump. Shenker was known to be an experienced skydiver who had over 300 jumps under his belt.
  • Boxer Rubin 'Hurricane' Carter dies at 76

    Boxer Rubin 'Hurricane' Carter dies at 76

    New Jersey NewsNew Jersey News
    Rubin "Hurricane" Carter, the boxer whose wrongful murder conviction became an international symbol of racial injustice, has died at 76.
    Rubin "Hurricane" Carter, the boxer whose wrongful murder conviction became an international symbol of racial injustice, has died at 76.
  • 2 children die in overnight NYC fire

    2 children die in overnight NYC fire

    Sunday, April 20 2014 6:57 PM EDT2014-04-20 22:57:33 GMT
    Police say 4-year-old half siblings have died in an overnight fire at a home in New York City, and the twin of one of the children has survived.
    Police say 4-year-old half siblings have died in an overnight fire at a home in New York City, and the twin of one of the children has survived.
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