In 2001, Ebtesam Al Shehhi was 23 years old and looking forward to welcoming her first child into the world. When random symptoms began appearing, she first wondered if it was related to pregnancy. She was exhausted but couldn’t sleep. Any activity was difficult. Her headaches were immensely painful. As her symptoms worsened, Al Shehhi determined that they had to be the result of an underlying condition. But it would take 18 more years before doctors diagnosed her with neuromyelitis optica spectrum disorder (NMOSD).

According to The National, Al Shehhi lost her vision after having her first child. Her vision later came back following cortisone treatment. But as she expanded her family, her symptoms continued to worsen, with her vision further deteriorating. She traveled to Spain, Russia, and Thailand in search of an answer—but no doctors agreed on what was happening.

Finally, 18 years after her symptoms began, her uncle took Al Shehhi to the Sheikh Shakhbout Medical City. After a number of tests, doctors told Al Shehhi that she had NMOSD. They began treating her soon after with ravulizumab, a humanized monoclonal antibody complement inhibitor.

Ravulizumab is usually used to treat myasthenia gravis, atypical hemolytic uremic syndrome, and paroxysmal nocturnal hemoglobinuria. It works by preventing the activation of complement component 5 and slowing down an overactive immune system. Since receiving the treatment, Al Shehhi feels as though she has a new lease on life; her symptoms have been significantly reduced and she is better able to enjoy time with her family. 

About Neuromyelitis Optica Spectrum Disorder (NMOSD) 

Also known as: Devic disease

Neuromyelitis optica spectrum disorder is a rare, chronic disorder of the spinal cord and brain. It is characterized by optic nerve inflammation (optic neuritis) and spinal cord inflammation. While the exact cause of NMOSD is unknown, it is typically considered to be an autoimmune condition. People with NMOSD may experience “attacks” of symptoms, followed by periods of remission. It may be misdiagnosed as multiple sclerosis since it does share some similar symptoms and manifestations.

Symptoms of NMOSD can include:

• Eye pain
• Vision loss (in one or both eyes) 
• Transverse myelitis 
• Limb and/or spine pain
• Lower limb paralysis
• Changes in deep tendon reflexes
• Neck stiffness
• Headaches
• Loss of bowel and/or bladder control