Ashley, who is 21, has been tortured by excruciating, mysterious pain since she was a young girl 6 years to be exact. Doctors who have misdiagnosed, were baffled by or invalidated her misery. No drugs or therapies could solve her dilemma, so the medical community and insurance providers said it didn’t exist. You can’t blame them, entirely. Her condition is a little-known – but very, very real.
Ashley finally found a specialist who understands her pain. Ashley has was is called Chiari Malformation, which is a serious neurological disorder affecting the skull and spine - and 300,000 people in the US alone have it. There is no absolute cure; patients with Chiari Malformation will be imprisoned by continuous pain as long as they live – but there is some hope available! A procedure called Foramen Magnum Decompression Surgery can alleviate 70 to 80% of the ceaseless torment.
Those afflicted with Chiari Malformation miss out on a huge part of their personal and working time. Their quality of life is lower and definitely lonelier because of this. If they are fortunate enough to receive a proper diagnosis and the blessed relief of Foramen Magnum Decompression Surgery, not only are there vast areas of medical care not covered by insurance, but recuperation time is 30 to 90 days (depending upon a variety of factors), which puts an additional financial strain on patients and their caregivers. Please help bring awareness to this Chiari and more Chiari research to diagnose quicker and even better results in surgery.
We thank you in advance for any assistance you can provide. Ashley is trying to turn a negative into a positive by ‘paying it forward.’ Even while in extreme pain, she is organizing fund raisers to bring awareness to confused, neglected sufferers and their physicians, and is determined to help other families who struggle with this terrible disorder. Many ...Thanks!