Woodward, Okla. — Psuedotumor cerebri with papilledema.

No that isn’t a foreign language, it’s a medical condition.  One that 15-year-old Carla Mann, of Gage, was diagnosed with a little over 5 years ago.

It is a form of Intracranial Hypertension, which Carla’s mom Virginia Mann said means “your body basically builds up too much spinal fluid.”

This in turn can create “a lot of pressure” around your brain, Mann said, “giv(ing) you a headache 10 times worse than any migraine.”

In Carla’s case, she said the pressure also affects the optic nerve, causing it to swell and affecting her daughter’s vision.

It was this swelling that led to the teen’s diagnosis, when an optometrist spotted the problem during a routine eye exam and referred her for a CT scan, Mann said.  That scan then led to another referral, this time to a neurologist “who ran more tests” before finally diagnosing it as a form of Intracranial Hypertension (IH), she said.

Patients with IH can sometimes even lose their vision.

“I had a sister who lost her eyesight to this,” Mann said.



TREATMENT ISSUES

Mann’s sister also suffered from muscle loss after taking certain medications to try to treat the disease, she said, noting that is why Carla currently is not taking any medications.

However, she said Carla has received other forms of treatment.  At first the teenager was receiving spinal taps every 2 to 3 months to relieve some of the pressure.

She said having a spinal tap “just puts her to bed because it would make her sick to her stomach; and she would have to lay flat for 24 hours after the spinal tap.”

“Then she would feel good for a while until it just built up too much again,” Mann said.  “It’s kind of a crazy thing.”

She said once doctors realized it wasn’t a condition that Carla would grow out of, they decided to stop the spinal taps and decided that she should have shunts put in to hopefully drain the fluid.

“She’s had 2 surgeries to have shunts put in,” Mann said, noting that it has only been a couple of months since the surgeries, “so it’s still too early to tell if the shunts are working properly.”



STILL NEED TO FIND A CURE

But even if the shunts are working, “it’s not a cure,” Mann said.

That is why she and her daughter have organized a 5K Fun Walk/Run in their small community of Gage to help raise money  for the Intracranial Hypertension Research Foundation (IHRF).

According to the IHRF website www.ihrfoundation.org, the organization was founded in 2001 by Dr. Emanuel and Amy Lois Tanne after their daughter was diagnosed with IH and they learned little money was available for IH research.  The website states “IHRF is the only non-profit organization in the world devoted to supporting the medical research of chronic intracranial hypertension.”

As the foundation works to find a cure to IH, it is also working to learn more about the disease.

For example, Mann said “at one point, they didn’t think it was hereditary.”

However, she said the more research they do and the more they learn about the disease, “they’re finding more families with more incidences.”

In Mann’s case alone, she said, “we have 4 people in our family that have been diagnosed with it.”



GAGE 5K EVENT DETAILS

With such an intimate connection with the disease, Mann said she and her daughter wanted to do their part to help support research for a cure.

So to go along with the IHRF’s fundraising campaign of “Race Around the World in 30 Days” this September, the mother and daughter will hold a 5K walk/run on Sept. 18 at Gage Beach.  Registration for the event will be from 6:30 a.m. to 7 a.m. with the walk/run starting at 7:30 a.m.

Participants will either walk or run to the airport road in Gage and then return back to Gage Beach.  But Mann said the event will not be a traditional 5K race.

“This is just for fun,” she said, noting she also wanted to keep the event open to as many people as possible in hopes of raising more money.

However, prizes will still be awarded.   But instead of handing out prizes to those who complete the walk/run the fastest, Mann said she is planning on presenting all participants with a prize provided by event sponsors.

“It may be a little cheesy such as a nail clipper or it may be a savings bond.  We’ll just throw everybody’s name in a hat and have a drawing and the prize you get is the prize you get,” she said.  “But everybody should get a prize, unless we get a lot more participants than I think.  I only got prizes for 50 so far.”

Participants are encouraged to pre-register for the 5K walk/run as a head count is needed for a lunch that will be provided for all participants around 11 a.m., Mann said.  Participants will also be allowed to visit the Gage pool free of charge following the event, she said.

“We’re trying to make it a full day,” Mann said, noting, “we thought if there was other stuff going on, we might draw more people.”

For more information or an entry form call (580) 571-1155 or e-mail Gage5K@yahoo.com.