Residents Rally To Bring Awareness To Rare Diseases - New York News

Residents Rally To Bring Awareness To Rare Diseases

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Trenton, New Jersey (My9NJ) - At the state capital last week, people with rare diseases from all over New Jersey came together to raise awareness of the issues and struggles individuals face when they are diagnosed and live with crippling diseases.

One by one, people affected by rare diseases stepped up to the podium to talk about how their lives and families have been impacted.

Kevin Ovitz was the first person to get up and talk about his experience of having both of his daughters diagnosed with Hyperinsulinism. Luckily for the Ovitz family, advancements in modern medicine have allowed his daughters, who both would have been in wheelchairs, to be happy and healthy normal young girls.

“We found the best physicians in the world at children’s hospital in Philadelphia. We planned for that baby’s delivery; you have to excuse me I’m a little emotional because that baby is now a 3-year-old who is sitting in this room right now.”

There are more than 6,000 known rare diseases, and though this sounds like a lot, usually people who have a disease are in a group with very few other cases.

Another woman, Ronnie, with tears in her eyes, pleaded for help for her husband.

“My husband is a CADASIL patient and he’s gotten Medicaid to help him with the expenses of nursing home care which he desperately needs. Now they are telling me they’re taking the Medicaid away from him because he makes approximately $50 more a month in social security,” she explained.

For this illness alone, the diagnosis test costs about $20,000 and care costs $150,000 annually. When she approached Medicaid about giving up the pension which is about $150 a month, they told her that she would be committing Medicaid fraud.

While it’s clear that more has to be done to help these people in need, bringing awareness to rare diseases is a good first step.


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