In the Fall of 2013, my first year of college was finally beginning. I was loving life, embarking onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. new experiences, and finding my passions. I had always been a homebody growing up and my mom was my best friend – we always stayed connected. Things were going very well and I wasn’t worried about much going wrong at the time. One day in the Spring of 2014, I received a call from my parents. My dad told me that my mom had extreme pain in her eyes and was going blind.
My family was in a state of confusion and fear. As I continued my semester, my family kept me updated onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. the status of her vision. My parents were going to doctors trying to get to the bottom of it. When we met for lunch, we had to help escort her around because her vision was “blocked” by a large dark spot. When I moved out of my dorm room in May, she perceived the evening daylight as darkness, thinking it was nighttime. I never would have guessed that this was what I would be coming home to for summer break.
She was finally given a diagnosis – NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease (Neuromyelitis Optica Spectrum DisorderA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease). NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease is a demyelinatingThe process in which the protective coating of nerve tissue (i.e. myelin) becomes damaged or breaks down, causing nerve impulses to slow or halt that results in neurological problems. disease that attacks the optic nerveThe cranial nerves that relay messages from your eyes to your brain to create visual images. These nerves extend from the retina in the back of the eyes to the part of the brain that processes what we see. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), they may be the target of inflammation or lesions, sometimes causing visual disruption or blindness. and spinal cord. My mom was put onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. RituxanThe common brand for this drug is Rituxan. A therapeutic drug that suppresses the immune system often prescribed in certain autoimmune conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD), this medication is used to suppress the immune system to reduce disease activity. and stayed onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. this treatment for four years. She was referred to Dr. Michael Levy for care, who is a world authority onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease and heads research onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. this subject. He decided to treat her with RituxanThe common brand for this drug is Rituxan. A therapeutic drug that suppresses the immune system often prescribed in certain autoimmune conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD), this medication is used to suppress the immune system to reduce disease activity., but she had breakthrough attacks about once a year. Some attacks continued to further damage her eyesight, and some caused weakness, spasms in her legs, and loss of bladder control.
Recently, Dr. Levy finished developing an antibodyA protective protein produced by your immune system that attaches to antigens (foreign substances), such as bacteria and toxins, and removes them from your body. In myelin oligodendrocyte glycoproten antibody disease (MOGAD), the body incorrectly produces an antibody that targets myelin oligodendrocyte glycoprotein, a component of the myelin sheath in the central nervous system. test at Johns Hopkins for MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths.. MOG antibody diseaseOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease presents itself similarly to NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease. The difference is the mechanism of the disease; NMOSDA disorder of the central nervous system that primarily affects the nerves of the eye and the spinal cord. Also known as Neuromyelitis Optica (NMO) or Devic’s Disease targets Aquaporin-4, while MOG antibody diseaseOften referred to as MOGAD, Anti-MOG, MOG Ab+, MOG Antibody Disease, MOG Associated Antibody Disease, MOG positive disease targets myelin oligodendrocyte glycoprotein (MOG)A type of protein involved in cell adhesion. Present throughout myelin sheaths.. My mom tested negative for the MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. test in the past, but with Dr. Levy’s new, more sensitive test, she tested positive. She had finally found her smoking gun. This new diagnosis was significant for the path of her treatment plan. Since RituxanThe common brand for this drug is Rituxan. A therapeutic drug that suppresses the immune system often prescribed in certain autoimmune conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD), this medication is used to suppress the immune system to reduce disease activity. had not been working as well as expected, her medicine was then switched to CellCeptCellCept is the brand name for Mycophenolate Mofetil (also sometimes referred to as MMF). It is an immunosuppressant medication often prescribed for some autoimmune conditions. For myelin oligodendrocyte glycoprotein antibody disease (MOGAD), this medication is used to suppress the immune system to reduce disease activity..
Watching these series of events unfold has inspired us to take action on the lack of awareness for this rare auto-immune disease. The MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Project is a campaign that we have launched under the umbrella of SRNA that advocates for a spectrum of rare neuroimmuneA term that refers to the components of the immune system that acts in and affects the central nervous system. disorders. The Project will stand up for MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. patients and help us obtain a better understanding of this illness. There are not adequate online resources for us to seek help and support, besides the MOG Facebook group. During the “non-attack” periods, many MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. patients do not look ill. My mom remained positive and continued to be the super-mom that she is – it is easy to forget what someone is going through when they have an “invisible” illness. This is why we need to provide an outlet for MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. patients – to show them that they are not alone in this fight.
Our story is important. Myself, Julia Lefelar, Cynthia Albright, Amy Ednie, Peter Fontanez, and Pamela Fontanez are teaming up with SRNA to tackle the missing pieces for the MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. community. As the founders of the MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. Project, we hope to provide MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. patients with everything that my mom did not have. We strive to influence the medical community to maintain a better understanding of this rare auto-immune disease, so that they can be prepared for future diagnoses. We hope to push for research funding that will aid in finding a cure through fundraising and donation efforts. We believe that it is our duty to educate new MOGA type of protein involved in cell adhesion. Present throughout myelin sheaths. patients onInflammation of the optic nerve that may be classified as unilateral (affecting one eye) or bilateral (affecting both eyes) that may result in vision changes, vision loss, and/or pain with eye movement. their disease, connect them with a supportive community, and raise awareness to our mission.
