Rare disease bill heads to the Mississippi House

Rare disease bill heads to the Mississippi House

SOUTH MISSISSIPPI (WLOX) - Action is being taken to bring awareness to rare diseases in Mississippi. A bill is making its way to the House this week that could help in the effort.

One in ten Americans lives with a rare disease. A coast child is in that category. Four-year-old Willow was diagnosed with Multiple Sulfatase Deficiency (MSD) at the age of two.

Willow's mom, Amber Olsen, remembers looking to the doctor for hope.

"We thought there would be an experimental drug or a clinical trial or something we could try and he said, 'I'm sorry, the disease is so rare that there's nothing out there,'" said Olsen.

Olsen believes something has to change to bring more awareness to rare diseases in our state. That's why she's happy that Senate Bill 2463, or the Rare Disease Advisory Council Bill, is making its way through the capitol.

Rare diseases are classified as fewer than 200,000 cases per year. There are 7,000 different types of rare diseases, making the number of Americans living with them in the tens of millions.

"We're trying to bring attention to these rare diseases that are really not that rare. The kids in each disease are rare, but there are 7,000 rare diseases. So there are more kids with these rare diseases than there are with cancer and AIDS combined," said Olsen, "I think as mothers and parents we've all stood up and said enough is enough."

The Rare Disease Advisory Council Bill is headed to the House, and there is a chance for you to have a voice in the process. Rare Disease Day will be held in Jackson on February 28, and everyone is invited to take part to get the attention of our state's lawmakers.

The first goal of the advisory council, according to the state's volunteer ambassador for rare disorders, Nancy Depreo, is to increase the ability to diagnose.

"The second goal is to get more doctors and more research in our state. Many patients with rare disorders in Mississippi have to go to other states for treatment, so we have to work harder on that," said Depreo.

There is a 5K and one-mile fun run in Ocean Springs this weekend in honor of Willow. There is also a Rotary Club drawdown at the Ohr O'Keefe Museum of Art in her name. To find out more about these events click on the following links:

Zebra Run for Rare Disease: https://www.facebook.com/events/1445002468952668/
WarriOHRs for Willow Rotary Drawdown: https://www.facebook.com/events/2059288370970115/

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