TALLAHASSEE, Fla – Imagine finding out you have a life altering illness– when you only believed you needed glasses. That’s exactly what happened to one woman who suffers from Idiopathic Intracranial Hypertension –IIH– for short. September is IIH Awareness Month.
Sarah Sims thought her intense headaches were a symptom of strained eyesight, so she made an appointment to get glasses. But that’s not the diagnosis she received.
“They said your optic nerves are swelling. I’m like, ‘Okay, well give me some eyedrops and some glasses.’ They’re like, ‘No, we have to send you to a neuro-ophthalmologist.’”
From there, Sarah learned she suffered from Idiopathic Intracranial Hypertension—it’s commonly called a false brain tumor. But what might surprise you is there’s nothing false about her suffering and the surgeries that accompany this very serious condition. Since 2013, she’s had two brain surgeries and three spinal surgeries. Spinal taps have become a part of her life to relieve her pain.
“And it’s even more painful now that I have the shunt, and they have to be super careful that they don’t damage the shunt.”
Sarah says doctors tell her there’s no proof patients can die directly from IIH— but says the consequences of the disease are life-threatening.
“The side effects and everything that happens that kills you. The infections, you know, stroke, seizures, meningitis,” said Sarah.
Sarah is speaking out about IIH because she wants to raise awareness—to educate others—not only people who may be suffering, but also the medical community as well.
“I don’t expect a cure in my lifetime. Absolutely not. But maybe my kids. You know. I’d would love that. I would love to have that and look down on them. Just something small. I just want something small.”
For more information on IIH, please click here.