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Wednesday, April 17, 2019

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Color Run to benefit and bring awareness to little known disease

Color Run to benefit and bring awareness to little known disease

A 5K Color Run will be held on Sunday, September 27 at the Cut Off Youth Center to help bring awareness and benefit a disease that many people know very little about.

The Color Run is the very first Scleroderma Awareness event in Louisiana and organizers are hoping the community rallies together in hopes of raising awareness of a rare disease that has affected several families in the community.

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases.

Everything about scleroderma can at times seem overwhelming from the diagnosis to daily living. These are just a couple of reasons why organizers have joined together as patients and family members to help others learn more about the disease, symptoms, diagnosis, and treatment.

Each patient’s journey with this disease is different, a reason why it’s so important to join together to share knowledge about the disease, and more importantly, to spread awareness throughout the area due to the high numbers of cases diagnosed in such a small area. Nine patients have been diagnosed with the disease in the southern part of Lafourche Parish, with three living in one neighborhood alone.

According to one doctor, those numbers in such a small radius may be considered a cluster.
One of the leading scleroderma specialists and researchers in the country, who shares the concerns, will be speaking at the Color Run.

Scleroderma is not contagious, infectious, cancerous or malignant, and can be serious. It affects the skin causing it to harden. But that’s only one of the many side effects. The disease causes fatigue, stomach problems, joint pain, muscle aches, and in many cases, progresses to organ involvement. For those affected, it leaves no aspect of their lives untouched.

Proper diagnosis can also take years. Many people are misdiagnosed due to lack of awareness, even among physicians.

Early diagnosis and proper treatment are critical to recovery of quality of life, another reason why raising awareness is so crucial.

Currently, there is no cure for scleroderma, but there are many treatments available to help particular symptoms.
So join in the Color Me For a Cure Scleroderma Awareness 5K Color Run on Sunday, September 27, beginning at 8 a.m. at the Cut Off Youth Center. Registration is $35.

The Color Run will begin at the Youth Center, proceed to Cut Off Elementary School and then go back to the Youth Center.

The event will be held rain or shine. However, organizers stress that the event could be cancelled due to extreme weather conditions only. In that case, there will be no refunds and entry fees will be donated to the Scleroderma Foundation.

For more information contact Jean at 985-855-0757, Paige at 985-696-5409, or Britt at 985-258-5558.
And, don’t forget to wear white!