Medical & Nursing for Shannon Kelly
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Many of you know Shannon as an active, fun-loving, Bichon Frise enthusiast, compassionate volunteer serving the less fortunate in her community, and a professional Accessibility Expert.
Shannon became devastatingly sick in 2016 and has been searching for a clear diagnosis and treatment. Meanwhile, she needs full-time in home nursing care and help with medical bills that are not covered by her insurance.
So far, Shannon’s doctors have identified numerous neurological and autoimmune conditions which come with debilitating pain and life-altering symptoms.
So far doctors have identified:
Bradykinesia - slowness of movement, typically associated with Parkinson’s
Bradyphrenia - slowness of thought – common to many disorders of the brain
Encephalopathy - refers to disease that damages the brain
Autonomic Neuropathy - damage to the nerves that manage every day body functions. like blood pressure, heart rate, sweating, breathing, digestion, etc.
White Matter Brain Disease - multiple lesions on the brain
Macroadenoma - large non-cancerous tumor on the pituitary gland at the base of herbrain
Abnormal Sensorimotor Nerve Activity
Chronic Whole-Body Fibromyalgia
She is now confined to a wheelchair unable to walk; has limited use of her arms; struggles with migraines, as well as thoughts and communication; is unable to do her own personal care; has endless chronic fatigue; and gets very winded with even short conversations.
(Home Nursing Aid)
(Home Intravenous Immunoglobulin Treatments)
Shannon’s nervous system is being destroyed more each day, and there is something larger and more imperative that must be treated to save Shannon’s life – they must find the cause of radically high levels of Anti-Gad Antibodies.
These Antibodies are usually associated with a very rare disease called Stiff Person’s Syndrome (SPS). Normal range for these Antibodies is less than 5, SPS can be diagnosed at 250, Shannon’s range is in the thousands, and in some tests show over a million. The medical community says they have not seen levels this high before.
She has numerous debilitating symptoms, yet none known to be associated with SPS. This is exceptionally rare and puzzling.
(Plasmapheresis treatments)
She has been treated by local specialists along with specialists at University of South Florida, University of Miami, Tampa General Hospital, Mayo Clinic and is now referred to Johns Hopkins University. A myriad of treatments have been performed that include both IVIG (Intravenous Immunoglobulin) and plasmapheresis (blood plasma exchanges/transfusions). Each plasma blood exchange treatment is $50,000.
Shannon has already received 5 treatments of Plasmapheresis since March 2017. Neither of the treatments are covered by her insurance.
Shannon has exhausted all her savings and resources. She needs your support so she can have in-home nursing which is not covered by her insurance, to help with daily personal care, feeding, mobility, and transportation to doctors. It is also crucial she get treatment by highly specialized medical staff that have seen and successfully treated very rare and similar cases from around the world.
Without highly specialized care Shannon’s body will continue to decline.
Please Help!
Please help us raise $60,000 for Shannon to pay for nursing care, pay medical bills, and continue to receive medical treatments.
About Shannon's Accessibility Career
Many of you know Shannon by her career and the impact she had on the disability population around the world. She was among the pioneers in the Digital Accessibility industry recognized as both an expert and an advocate passionate for ensuring equal access and improved quality of life for those with disabilities. Learn more on her career and bio on Linkedin , by visiting the PDF Accessibility Blog , or read more about her expertise as the PDF Document Accessibility Expert .
Thank You and God Bless.
Shannon became devastatingly sick in 2016 and has been searching for a clear diagnosis and treatment. Meanwhile, she needs full-time in home nursing care and help with medical bills that are not covered by her insurance.
So far, Shannon’s doctors have identified numerous neurological and autoimmune conditions which come with debilitating pain and life-altering symptoms.
So far doctors have identified:
Bradykinesia - slowness of movement, typically associated with Parkinson’s
Bradyphrenia - slowness of thought – common to many disorders of the brain
Encephalopathy - refers to disease that damages the brain
Autonomic Neuropathy - damage to the nerves that manage every day body functions. like blood pressure, heart rate, sweating, breathing, digestion, etc.
White Matter Brain Disease - multiple lesions on the brain
Macroadenoma - large non-cancerous tumor on the pituitary gland at the base of herbrain
Abnormal Sensorimotor Nerve Activity
Chronic Whole-Body Fibromyalgia
She is now confined to a wheelchair unable to walk; has limited use of her arms; struggles with migraines, as well as thoughts and communication; is unable to do her own personal care; has endless chronic fatigue; and gets very winded with even short conversations.
(Home Nursing Aid)(Home Intravenous Immunoglobulin Treatments)Shannon’s nervous system is being destroyed more each day, and there is something larger and more imperative that must be treated to save Shannon’s life – they must find the cause of radically high levels of Anti-Gad Antibodies.
These Antibodies are usually associated with a very rare disease called Stiff Person’s Syndrome (SPS). Normal range for these Antibodies is less than 5, SPS can be diagnosed at 250, Shannon’s range is in the thousands, and in some tests show over a million. The medical community says they have not seen levels this high before.
She has numerous debilitating symptoms, yet none known to be associated with SPS. This is exceptionally rare and puzzling.
(Plasmapheresis treatments)She has been treated by local specialists along with specialists at University of South Florida, University of Miami, Tampa General Hospital, Mayo Clinic and is now referred to Johns Hopkins University. A myriad of treatments have been performed that include both IVIG (Intravenous Immunoglobulin) and plasmapheresis (blood plasma exchanges/transfusions). Each plasma blood exchange treatment is $50,000.
Shannon has already received 5 treatments of Plasmapheresis since March 2017. Neither of the treatments are covered by her insurance.
Shannon has exhausted all her savings and resources. She needs your support so she can have in-home nursing which is not covered by her insurance, to help with daily personal care, feeding, mobility, and transportation to doctors. It is also crucial she get treatment by highly specialized medical staff that have seen and successfully treated very rare and similar cases from around the world.
Without highly specialized care Shannon’s body will continue to decline.
Please Help!
Please help us raise $60,000 for Shannon to pay for nursing care, pay medical bills, and continue to receive medical treatments.
About Shannon's Accessibility Career
Many of you know Shannon by her career and the impact she had on the disability population around the world. She was among the pioneers in the Digital Accessibility industry recognized as both an expert and an advocate passionate for ensuring equal access and improved quality of life for those with disabilities. Learn more on her career and bio on Linkedin , by visiting the PDF Accessibility Blog , or read more about her expertise as the PDF Document Accessibility Expert .
Thank You and God Bless.
Organizer
Shannon Kelly
Organizer
Lutz, FL