Jonathan James is one of 18,000 people nationwide who suffer from hemophilia. It's an inherited bleeding disorder where the body lacks the ability to properly clot blood, which leads to internal hemorrhaging and over time bone deterioration.
Each day he must take medication through an IV, and each year the cost of his medication adds up to over a million dollars.
"Just for me to get out of bed and come here this morning cost me $6,000 in medication," said James during his interview.
That daily medication is just so he can function each day.
According to James, the average yearly medical cost for hemophilia patients is around $200,000. For some the cost is less and for some the cost can be much more, as in James's case. While most is covered by insurance, James says high deductibles often lead to high out of pocket expense.
That cost does not include what James calls "seasons of crisis." For hemophilia patients, even small bleeds can become life threatening situations leading to weeks or months of hospital stays, surgeries and procedures.
These times of crisis can lead to work lost and drain a family finically and emotionally.
It was during one such crisis for James that a new organization was born.
"Many people in the medical community and also in their social circles just don't understand these seasons. So it takes an organization like ours to set in and hold their hand like a friend and be there like a family member," said James.
With the help of family and friends James founded Hope for Hemophilia in 2009. The nonprofit helps hemophilia patients nationwide by providing financial assistance, emotional support, and practical help when going through a time of crisis. The demand on the group grows each year.
"This year alone we have tripled the amount of patient needs that have come in the door because people have learned about us and they know that we're around and we need help," said James.
To help support the growing demand, the group is looking for help from the community with the first annual hope for hemophilia fundraiser banquet.
The banquet will be at White Oak Plantation at 6:30 Thursday, October 17.
For more information about hemophilia, or to get involved with Hope for Hemophilia, visit their website www.hopeforhemophilia.com.
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