We have been desperate for answers, desperate to find some hope for Alison. Starting with her current care team, we asked them to dig deeper and help us figure out what we’ve been missing. And wow, we’ve found a lot! After a trip to Cleveland Clinic, visits with more specialists, and dozens of tests, we finally feel we’re on the right path with her care.
Your donations up until now have allowed us to travel to hospitals, buy her a power wheelchair, and pay for out of pocket specialists and treatments. But we still have much more to figure out. This journey continues for Alison and will be a life-long battle for her. She will need continuous treatment, therapy, and care, so she can feel her best every day.
Please consider giving whatever you can to help with her continued care and please share this fund with others. Would you also take a moment to read Alison’s full story below, watch the videos, and check out the links? They explain things far better than we could. If you have questions, please reach out to us. As always, we appreciate your prayers and loving concern for our family.
Ken and Krista
Her nickname is Alice the Goon. That gives you a glimpse into her goofy personality. Even as a baby she was silly and a sheer joy to be around. Alison was a happy, healthy child, but throughout high school she struggled with daily headaches and widespread pain after suffering a head and neck injury in 9th grade gym class. By December of her senior year she had what her doctor called an intractable headache. Around that same time she began passing out and falling, often times getting hurt in the process. In order to graduate high school that year, she stayed at home with a tutor. Her doctors were attempting to treat her with numerous medications but nothing worked.
That onset of headache was 16 years ago, and although she has had periods of time when she felt somewhat better, for the most part it has been a nightmare of a struggle. After 6 years of finding no help, we were so relieved when a new neurologist at Albany Med accepted her as a patient. He discovered that she had Intracranial Hypertension , also called Pseudotumor Cerebri (mimics a brain tumor), which meant she had too much spinal fluid and her brain was under too much pressure. Alison had brain surgery and a neurosurgeon put in a shunt to drain out excess fluid. The shunt has prevented her from going blind but the headache, and passing out remained.
Over the last 10 years, new and worsening symptoms began, and over the last two years, Alison became devastatingly incapacitated. In November, we took her to Albany Med ER with chest pain, tachycardia, severe vertigo, and shortness of breath. She was tested for all sorts of heart problems, but in the end, a very smart hospitalist suggested that she should be evaluated for POTS or Postural Orthostatic Tachycardia Syndrome . He was right! Alison’s POTS diagnosis was confirmed at Cleveland Clinic a few months later. Alison now has a Dysautonomia Specialist who is treating her POTS and related symptoms. Alison’s neurologist also tested her for Small Fiber Neuropathy, which was positive, and he has earnestly tried to find the underlying cause of the nerve damage, but so far there has been nothing conclusive. At the moment Alison is receiving plasmapharesis treatments regularly to help treat the SFN. She is also seeing a Functional Neurologist who is working to heal her adrenal fatigue and manage her digestive health.
The biggest step forward was a diagnosis of Hypermobile Ehlers-Danlos Syndrome which is a genetic connective tissue disorder. This was something she was born with and is most definitely the link between these seemingly unrelated conditions. Many patients with EDS often have POTS, SFN, IH, and spinal degeneration/damage along with many of the other symptoms that Alison suffers from. It’s not exactly known why some of these conditions are related, but it has helped Alison find some peace with her body. As devastating as this diagnosis has been for Alison, it has offered her hope for improvement in the future with the right therapies and treatments. That’s our hope too…because we all want our goonie Alison back. Those of you who know and love her, understand how important that is!
A video of Alison from August 2018
What is EDS? (There are now 13 known subsets)
What is POTS?
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