OUR WITNESS by Timesia Hart
Our Witness shares both the darkest and most inspiring parts of her ten-year journey to figure out what was happening to her body, and to find a cure in spite of both debilitating disease and medical resistance. Our Witness also shares the stories of those closest to Timesia, as they struggled through watching a loved one suffer through pain, disability, and depression, with doctors holding out “little hope of recovery.” A compelling, heart-driven memoir, Our Witness is an affirmation that there is hope in the darkest hour. For patients and those who love them, it is a reminder that others have been down this path before and found their way.
Living to Win aspires to educate the medical public, raise awareness, and assist patients and their families.
The L2W Foundation began after my struggle with a MS misdiagnosis in 2009, 11 month paralysis, stem cell transplant in 2013, and constant treatment, rehab, fighting with insurance.
Neuromyelitis Optica (NMO) aka Devics Disease according to the NORD (National Organization for Rare Diseases) is a rare orphan autoimmune disorder of nerve tissue characterized by inflammation of the optic nerve (optic neuritis) and inflammation of the spinal cord (myelitis). In the early stages may be confused with Multiple Sclerosis (MS).
Past Events
Naturals Game with Living to Win
Purchase Music by Timesia Hart
Music is medicine for hurting lives, this recording is intended to be a dose of hope, encouragement, and peace to anyone hurting. The disease severly affected my lungs so the fact that I was able to record is another testament of the faithfulness of our Great and Mighty God. Different from most recorded music indeed … nothing to echo.
I WANT ENDURE!About Neuromyelitis Optica
NMO, Causes and Sypmtoms
Neuromyelitis Optica (NMO) aka Devics Disease according to the NORD (National Organization for Rare Diseases) is a rare orphan autoimmune disorder of nerve tissue characterized by inflammation of the optic nerve (optic neuritis) and inflammation of the spinal cord (myelitis). In the early stages may be confused with Multiple Sclerosis (MS).
Greater than 95% of patients with NMO report no relatives with the disease, but approximately 3% report having other relatives with the condition. There is a strong association with a personal or family history of autoimmunity, which is present in 50% of cases. The exact cause for NMO is unknown. Autoimmune disorders occur when the body’s natural defenses against disease or for unknown reasons, suddenly begin to attack healthy tissue.
The characteristic symptoms of NMO are either optic neuritis or myelitis; either may occur as the first symptom. Optic neuritis is inflammation, of the optic nerve leading to pain inside the eye which rapidly is followed by loss of vision. The other cardinal syndrome is inflammation of the spinal cord, a condition known as transverse myelitis because the symptoms tend to affect all motor, sensory below a certain level on the body. Affected individuals may experience pain in the spine or limbs, and mild to severe paralysis of the lower limbs, and loss of bowel and bladder control. Deep tendon reflexes may be diminished, and variable degree of sensory loss may occur. Affected individuals may also have a stiff neck, back or limb pain, and/or headaches.
Diagnosis, Treatments and Outlook
A diagnosis of NMO is made based upon a detailed patient history, a thorough clinical evaluation, identification of characteristic physical findings, and a variety of specialized tests. Such tests include blood tests, examination of cerebrospinal fluid (CSF), spinal taps, or x-ray procedures such as magnetic resonance imaging (MRIs) or computed tomography (CT or CAT) scans. A blood test, NMO-IgG, is highly specific and moderately sensitive for NMO. It has been shown that it detects antibodies that are specific for an astrocyte protein, aquaporin-4. This is very helpful to request this test at the first significant suspicion of neuromyelitis optica, as it is frequently positive at the time of the very first symptom.
For acute attacks, the standard treatment is high-dose intravenous steroids. Plasma exchange may be effective in patients who experience acute severe attacks that do not respond to intravenous corticosteroids. Long-term suppression of the disease, no specific treatment has been studied in controlled clinical trials, but a variety of immunosuppressive drugs are regarded by many clinicians as first-line therapy. Rituximab has been shown to be helpful in retrospective studies, including in patients who fail first line immunosuppressive treatments. Immunomodulatory drugs for multiple sclerosis are ineffective, and in the case of interferon beta, there is some evidence that suggest that they may be harmful.
Most individuals experience a moderate degree of permanent limb weakness from myelitis. Muscle weakness can cause breathing difficulties and may require the use of artificial ventilation. The National Institute of Neurological Disorders and Stroke Most individuals experience a moderate degree of permanent limb weakness from myelitis. Muscle weakness can cause breathing difficulties and may require the use of artificial ventilation. The death of an individual with NMO is most often caused by respiratory complications from myelitis attacks.
Diagnosis, Treatments and Outlook
-Maddi Jenkins