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article imageOne woman's determination to defeat a rare disease Special

By Ben Morris     Jun 24, 2015 in Health
Tallahassee - There are no highly publicized marathons, or ribbons you can wear. The public is ignorant to the existence of the disease. Because of that; one woman is determined to find a cure, so no one else can suffer like she has.
Sarah Sims is a wife and mother whose life has been forever altered. She can no longer go to the beach without spending days in bed afterward. Her disease is Idiopathic Intracranial hypertension; a condition where the pressure is increased from Cerebro-Spinal Fluid. The CSF acts as a cushion between the brain and skull; with that increased pressure, people inflicted with the disease can acquire headaches, fall victim to vomiting and suffer from vision loss as well as a ringing in their ears. I.I.H is a crippling and frustrating condition that rips the joy out of an individual's life.
Without a cure, treatment is often tedious and painful. With research at the stages of infancy, many doctors don't know a lot about the disease and struggle to treat it. With all her surgeries and treatments, Sims feels like a bit of a guinea pig. She has had many medical procedures, has taken medication, and has two shunts inserted into her body. The catheter like device is used to drain excess fluid from the spine and brain into the stomach, in order to relieve some pain. The disease is not for the faint of heart; it is mentally and physically exhausting for anyone who develops the disease.
For Sims; the disease has ruined the aspects of her life that were "amazing." Speaking from her home in Florida, Sims recalls taking her family to amusement parks, the beach and going on family vacations before adding, "My daughter played soccer and I would practice with her. I went to museums, hiked trails with my sister in law. I worked in our yard, grew flowers and some vegetables." Sims had an active life that included enjoying the outdoors. Now, all of that has changed. She is too tired, and in too much pain to do the things she loves to do.
In late 2013, Sims went to the doctor complaining of headaches and vision problems. After numerous tests and visits she was given the drug Diamox; which made her limbs feel tingly. She lost her appetite and slept all the time, causing her family to be concerned. A trip to the ER revealed an allergic reaction to the drug, but Sims was undeterred, until December 4th, 2013 when she was being prepped for brain surgery.
"We checked in, they started the IV in my arm and we just waited until they came and got me for my CAT scan. It was then that it finally hit me. I cried on my bed in the hallway waiting for transport," recalled Sims who remembered, "every emotion" consuming her. At that point, reality crept in. She blamed God, questioning why He was doing this to her. After surgery an aunt who has twice defeated breast cancer was there to give her strength, and allow her to stop shedding tears. Since then, Sims has become defiant, and strong. Despite periodic bouts of depression and doubt, she firmly believes she will defeat this mysterious and unknown disease.
According to the American Association for Pediatric Ophthalmology and Strabismus, the cause of I.I..H is unknown, although many believe the failure of CSF to reabsorb into the body, causes the pressure onto the brain, and spine. A clinical trial conducted at Emory University found prescribing the drug acetazolamide (the scientific name for Diamox), and a strong weight loss program reverses the vision problems that plague I.I.H patients, but that study does not apply to Sims. the mother of three enjoyed being out of the house, and does not fit the typical description of a patient; confusing doctors who have told her she is a special case, which has added to her frustration.
"I have learned more and gained more knowledge from my own research and others in my support group (than from doctors)", Sims claims before adding, "Almost every question has gone unanswered. Like the why, the how and the most important will I die? And can you fix me?"
Sarah Sims after brain surgery
Sarah Sims after brain surgery
Willie E. Sims Jr.
Since December 2013, she has had three different operations, and has been prescribed, "somewhere around 25-30 different medications," that range from anti-depressants, to pain pills, to go along with numerous spinal taps. The frustration over the unanswered questions and the number of treatments is understandable considering the different types of doctors a person could need to fight the disease. As detailed on the I.H.R Foundation website, specialists ranging from neurology to endocrinology, and radiology could be needed to give the patient the care he or she needs. In Sims' experience, those doctors with different fields of study often contradicted themselves by disagreeing on what procedures Sims needed.
It is why she has gotten all the information about the disease through many different support groups, the small section of the population that depend on each other. These groups revealed tragedy, anger, and what the disease does. There is little information regarding the number of deaths caused by the disease; it's the side effects of the disease that are deadly. Stroke, seizures, bleeding from the brain, and suicide befall upon the victims. Those suicidal thoughts have crept into the brain of Sims after months and months of dealing with the symptoms of a debilitating disease.
"I've contemplated it. I've sat in my bed many times and dumped my pills out and counted them, wondering how much it will take to do me in, cause I'm tired of it."
Sims was recently told by doctors that there is not much else for them to do. It is a grim diagnosis for someone without strength and tenacity, but Sims is not a woman that will give up the fight. She has recently filed paperwork to receive care from Shands Cancer Hospital at the University of Florida, in Gainsville. The hospital is considered one of the best research hospitals in the country with a reputation of bringing people back to life. After a stroke, Sims own mother was "brought back to life," at the facility.
Sims has a disease with just 100,000 mostly female patients. The disease is rare, and she doesn't fit the description of the majority of women who suffer, but Sims has replaced depression with altruism by publicizing her condition. She wants a cure, her life back, and wants the same for everyone else.
To help fund a cure; you can visit the I.H.R Foundation website here.
More about Brain, Spine, idiopathic intracranial hypertension, Brain surgery, Rare disease
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