Local Mom Living with Brain Disorder Fights for a Cure

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Hopes to raise funds for a cure at the New Orleans WALK to End Hydrocephalus Oct. 3

Lori and her 18-year-old daughter Elizabeth.

Imagine living your entire life with headaches and then finding out that they were due to an incurable brain disorder that can only be treated with brain surgery? That’s what happened to Lori Logan, a local mom who was diagnosed with hydrocephalus at age 46. Hydrocephalus is a life-threatening neurological condition that affects over 1 million Americans. To date, Lori has endured four brain surgeries to treat her condition and she fears it may not be her last. That’s why she helped organize the New Orleans WALK to End Hydrocephalus taking place on October 3 at Heritage Park. The New Orleans WALK will raise critical funds for the Hydrocephalus Association’s research, education, and support efforts.

Lori struggled for years with severe headaches, taking over-the-counter medicine every day to ease her pain, but she never knew what was causing the headaches. Then an appointment with an ophthalmologist changed her life. He found extensive damage to the optic nerve in Lori’s right eye and recommended she have an MRI. The MRI showed that Lori had hydrocephalus, and that the excess fluid in her brain was damaging her optic nerve. Soon after, Lori had her first brain surgery.

“I never realized how much Ibuprofen I took until my husband pointed it out. I can’t remember a day throughout my life when I didn’t have a headache. I now realize that I probably had hydrocephalus ever since I had Encephalitis as a child, which can cause hydrocephalus,” Lori explained. “After several ups and downs, and different procedures over the years, I’m finally OK but I live with memory problems, and hearing and vision loss due to the hydrocephalus.”

Like so many people living with hydrocephalus, Lori’s condition has meant multiple hospital stays, frequent tests, and multiple brain surgeries. She hopes the New Orleans WALK to End Hydrocephalus will raise awareness and funds for research.

“I know how it feels to have hydrocephalus but I can’t envision having to deal with that as a parent. I want to raise funds for hydrocephalus research for myself but especially for the many children who are living with hydrocephalus. These kids do not need to be having surgery after surgery after surgery. It’s too much. We need a cure,” Lori said.

One in every 770 babies develops hydrocephalus, a complex, life-threatening condition marked by excess accumulation of cerebrospinal fluid on the brain. However, anyone at any time can develop hydrocephalus from a brain injury, tumor, or infection, and some people over 60 develop Normal Pressure Hydrocephalus, which is often misdiagnosed as Alzheimer’s, dementia or Parkinson’s. The primary treatment for hydrocephalus is the insertion of a device called a shunt – a small tube and a connected valve – into the brain to drain the excess cerebrospinal fluid to another part of the body. Shunts save lives, but frequently malfunction, become infected, or blocked. It is not uncommon for a person with hydrocephalus to have ten or more shunt-related brain surgeries throughout their lifetime.

The New Orleans WALK to End Hydrocephalus is one of 45 Hydrocephalus Association WALKS held across the country each year. All 45 HA WALKs are 100 percent volunteer-led by dedicated members of the hydrocephalus community. This year due to the COVID-19 pandemic, the New Orleans WALK had to make several changes, including requiring face masks, separating each family or team participating with tents, and ensuring that participants walk at least six feet apart.

This WALK will include live music from the Fat City Drug Corp (New Orleans’ Saints Drum Corp.), therapeutic ponies, a fire truck with Pluggy the Fire Hydrant, free flu shots offered by Walgreens, and much more!

Local sponsors include Koga Neurosurgery, Ochsner Health, Southern Surgical Hospital, Sam’s Club, and Sensus, a Xylem brand. National sponsors for the Hydrocephalus Association WALK program are Medtronic, Aesculap, Codman, an Integra Lifesciences Company, Mid-Atlantic Permanente Medical Group, and CereVasc.

On-site registration and check-in for the New Orleans WALK to End Hydrocephalus begins at 8:30 a.m. on Saturday, Oct. 3. To register online, visit: http://www.hydroassoc.org/neworleanswalk.  

About the Hydrocephalus Association  

Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association (HA) is the nation’s largest and most widely respected organization dedicated to hydrocephalus. Since 2009, HA has invested over $11 million in cutting-edge research, making it the largest non-profit, non-governmental funder of hydrocephalus research in the United States. The Hydrocephalus Association’s mission is to find a cure for hydrocephalus and improve the lives of those affected by the condition.

 

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