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Woman raising awareness of rare condition
Suffers from idiopathic intracranial hypertension
Brittany Bryant with husband Jonah and son Brody suffers from idiopathic intracranial hypertension, which affects her vision. - photo by For the Forsyth County News

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CUMMING -- A young Forsyth County mother is hoping to raise awareness of a rare condition from which she suffers.

Brittany Bryant began having strange symptoms when she was pregnant with son Brody, now 8.

“Throughout my pregnancy … I noticed I was starting to have vision changes and headaches,” she said. “Then it just progressed and got worse … So I went to the eye doctor and they checked my eyes and my optic nerves were swollen.”

After many doctor’s visits and tests, she was finally diagnosed in January 2013 with idiopathic intracranial hypertension. Bryant said it was hard to find a doctor who even knew exactly what the condition is, much less find an effective treatment.

“Most of the time when I go to a doctor’s office and tell them what I have, they said, ‘So you have high blood pressure,’” she said. “And I say, ‘No, I have perfect blood pressure. This is not related to blood pressure.’”

Rather, the condition is caused from an excess of cerebral spinal fluid.

“Your body cannot get rid of it or use it at all,” Bryant said. “When that happens, it then causes a crushing pressure on your brain and optic nerve, which can eventually cause you to go blind.”

About one in every 100,000 people in the United States is affected by the condition. Its rarity leads to little money being spent on research to find a cure.

The only courses of treatment for the condition are spinal taps, (Bryant has had several) and shunts (she’s had those too), where doctors create a hole or small passage that allows fluid to move.

There are also a couple of prescription medications, which she said “cause miserable side effects that are debilitating.”

“My vision was getting worse really fast, so they ended up putting and LP shunt in,” she said.

She said that was the best treatment at the time, but had problems with the shunt moving around and not working effectively, so she had to have several more surgeries to correct it.

All in all, she’s had some nine surgeries since being diagnosed. Just recently she underwent another to place a different type of shunt, which she said seems to be working better.

But she still suffers from migraine headaches and must visit the doctor often to ensure the shunt stays in place and works properly.

“Even doctors will tell you that they’re not cures,” she said of the shunts. “You’re still going to have days where your pressure is going to be up and you can’t do anything.

“[The shunt] is there to save my vision. But I still have to deal with the symptoms of this condition … now I’m not as scared of losing my vision.”

She said the condition has taken a big toll on her life, noting that she recently had to apply for disability. “I want to be able to do all the things that a normal 20-something should be able to do and I can’t,” she said.

Luckily, her family — her husband of nine years, Jonah, and parents Jimmy and Martha McConnell — have been very supportive throughout. Bryant said she’s especially grateful to her husband.

“Since this has happened, we haven’t had a normal life,” she said. “He’s having to be the sole supporter and work since I can’t. He also helps me with our son and doing things for him on the days that I’m not able to, so it’s really hard on him.”

Her mother, Martha McConnell, said the past couple of years “have been a roller coaster.”

“In the last 18 months, we’ve gone through a lot of procedures,” she said. “[The new shunt] has helped her condition, but there are adjustments to it and when she has those, she had several days of vertigo and headaches before her body adjusts.”

Bryant said she wants to raise awareness of the condition since little is known about it.

“It’s not researched like it should be,” she said. “There is one group, the IHR Foundation, that tries to raise money in hopes of finding a cure someday, but that’s the only group out there. Whereas there are so many for things like cancer.”

Since her diagnosis, Bryant said she’s met several people through social media with the condition.

“That’s helped a lot, just getting to have some people who I can speak with who really understand,” she said.

She hopes others with learn more about the condition and support the research efforts of the IHR Foundation.

“I would like for people just to research this and just make themselves aware that this condition is out there and it could be affecting someone close to them,” she said.