After several years of illness, our dear friend Katie Webb Kneisley has recently been diagnosed with a very rare combination of two diseases: late stage Lyme Disease and Paraneoplastic Syndrome. Although this is a rare diagnosis, it is treatable. The only insurance available to Katie is not accepted by her specialists and therefore does not cover her prescribed treatment. Katie cannot afford treatment herself as she has been unable to work since August, and is on state disability, after spending 13 years as a respected educator. As a single mother of two, Katie is now struggling to get by as her income has been nearly halved, and she cannot see her team of doctors as each visit is too expensive to pay out of pocket. Katie’s treatment should have begun in September. We are reaching out to raise money for our friend who will not be able to get better, take care of her children and resume her job without the funds necessary for treatment. Please help us in remedying this situation by contributing to her GoFundMe campaign.
Those of you who know Katie, know she is a tireless campaigner for others. She has raised money and awareness for a variety of causes, and has always put others first. She is quite simply the kindest person and best friend anyone could hope for. She is a wonderful mother, a thoughtful colleague, a compassionate teacher. If you’d like, you can continue reading to understand Katie’s full story.
In 2011, Katie started to experience rapid and unintentional loss in weight, muscle tone, and strength. In addition, she had severe parasthesia, extremely low blood pressure, horrible pain, significant sleep disturbance, sudden and severe sensitivities to a host of foods and medications, crushing fatigue and weakness. The combination of which all pointed to a truly alarming dysautonomia. Her heart rate and blood pressure remained consistently low and would periodically plummet further. So low that she was unable to drive her children around, and would have to be taken to the emergency room to receive treatment for the extremely low blood pressure. Still, her doctors could find no clear cause.
Her doctors insisted the problems must be impacted by the significant stress she was experiencing as a recently divorced single mom of two young children, who was also a teacher working long days. She finally pursued consultation with a doctor who came highly recommended as working with difficult-to-treat autoimmune cases, and he steered her down a road that was to lead her to some improvement, however small.
It was when she experienced periods of what she can best describe as memory "erasure" that she was referred to a neuroscience clinic. There, her neurologist referred her to the Mayo Clinic to determine what he suspected might be a paraneoplastic disorder. After Mayo conducted a two week work-up which yielded little, they sent her back home recommending thorough testing for cancer. A hysterectomy and several CT scans, MRIs, x-rays, ultrasounds, and mammograms later, no cancer had been detected. In the meantime, her neurologist prescribed an eight month series of IVIG infusions to keep her strong enough to conduct day-to-day life and to keep her viable at work.
As all these events transpired, though, her ability to perform professionally and at home suffered horribly. Her young children graciously made do despite her greatly diminished capacity to parent as she normally would, and coworkers compassionately came to her aid to help her stay afloat with teaching duties. As someone who enthusiastically assumed extra school responsibilities over the years--everything from department chair to tennis coach to academic team coach to grant coordinator, and more--this stark contrast in her work life distressed her horribly. She was forced to shed all work responsibilities that were unessential, and strove to streamline her home workload--but, still, her constitution declined rapidly overall, the pendulum swinging between days of almost normal strength and days of especially strikingly ill health. .
It wasn't until spring 2014 that one of her doctors suggested they investigate what seemed an improbable connection: Lyme disease. Initial tests showed suppressed immune function associated with Lyme, and more thorough labs did indeed confirm a diagnosis of late-stage Lyme disease.
It is a great blessing to be working with two doctors who seem to have discovered the missing link of her illness. But, to further complicate matters, her ability to handle the financial burden of treatments has been greatly reduced. After collapsing in front of her students, she has been living on a personal disability policy that pays 60% of her normal working income. Her savings have been depleted making up the difference between her reduced income and the mounting bills. Months have passed since her application for temporary medical disability was submitted to the Kentucky Teacher Retirement System. Even the meager coverage she has arranged through Kynect has yet to be activated due to several delays in processing information.
Office visits are entirely out of pocket for the two doctors who are treating her for Lyme, as will be office visits to all her doctors until her high deductible is met...that is, once insurance coverage even begins. The regimen of prescription medication she has been advised to start has been delayed by her intolerance to several drugs, but also due to her difficulty in affording the full, out-of-pocket price of the medications. Household bills have been stripped down to the essentials, with no cable, unnecessary memberships or similar expenses, and by kind friends and neighbors helping her to handle needs such as lawn care, and by her church assisting with a medical alert system. The initial regimen she is to follow now, in addition to costs for doctor visits and household bills, as well as the greatly diminished income she will continue to see until KTRS disability is approved, means there is a monthly deficit of around $700. Once KTRS disability is approved, that deficit would likely still be close to $600/month.
Katie has been told it is possible for her to experience a return to near-full, if not full, health with appropriate treatment and with time to launch a multifaceted approach to rebuilding her immune system. All she wants is to return to work and have a normal, vibrant life as a mother and teacher as soon as possible. Unfortunately, until she is able to secure ample health coverage and to cover the cost of doctor visits, tests, and medications, this process could be a horribly long and ineffective one.
It is completely unjust that Katie, who has a Master’s degree, a healthy career in education for the past thirteen years and an active member in her community cannot receive insurance that will cover her doctor visits and treatment so she can go back to work and care for her children. We want to remedy this now, with your help.