THOMASVILLE, N.C. — Emily Jordan Boyd wants to be just like any other mom, but being diagnosed with a rare brain disease makes it harder each day.
“Probably around July, I started having these random blackouts where I would just be walking around my house or something and my eyes would go completely black. Luckily I’d known stuff to grab onto really quick. I just didn’t know what it was,” explained Emily.
Symptoms such as excruciating headaches and vision deterioration confused Emily. An eye doctor said her optic nerves were swollen, signs of a serious problem. At first they thought it could be a tumor, but it turned out to be the result of something much more mysterious.
Emily was eventually diagnosed with intracranial hypertension. According the IH Research Foundation, it occurs in one in every 100,000 people.
Dr. Paul Martin, Emily’s neurologist, has been helping her manage the disease. He explained with IH, the brain either makes too much spinal fluid or isn’t using up enough.
“When this fluid builds up inside the brain, it pushes up and out against the normal brain tissue. [Patients] say, my head feels like it’s swollen in here, like it’s a balloon that’s blown up.”
The disease is debilitating, though not usually fatal. However, the surgeries and treatments related to the disease can cause complications.
Emily has had multiple surgeries to insert and maintain a shunt that drains fluid from her brain. Controlling the spinal fluid pressure is complicated, and the process has been financially and emotionally challenging.
Emily is using Facebook to find other IH patients and generate support for their disease. They have more than 1,800 “likes.”
They are organizing a Walk to Cure IH for Sept. 13, 2014. It will be at Midway UMC in Lexington. It will start in the CFC Building and the walk will be hosted next door at Griggs Farm.
Anyone interested in helping or donating for the walk can contact Emily.Jordan2222@yahoo.com.