Adjusting to Her New World With Neuromyelitis Optica Spectrum Disorder

It takes courage to suspect that there is something wrong and doctors are misdiagnosing your symptoms. It takes courage to keep going back and politely but firmly asks for more tests and a better explanation.

According to a recent article in Cranston Online, that is exactly what Aldelly did. In 2013, she was 25 years old and noticed that she was no longer able to wear her favorite high heels.

Other symptoms kept occurring such as physical pain, exceptional fatigue, and bladder problems. Her doctor dismissed each of her symptoms with an explanation for each occurrence. Even her bladder problems were attributed to her recent pregnancy.

But everything came to a head in 2016 when she had attended an office party. All of a sudden she was unable to walk, became exhausted, and could not control her bladder. Aldelly immediately contacted her primary care physician who referred her to a neurologist.

After administering an MRI and other tests, the neurologist explained to Aldelly that she had neuromyelitis optica spectrum disorder (NMOSD), a rare disease.

All she could think of was her two young children, her new home, and her job. Aldelly was in complete denial until other neurologists offered the same diagnosis. Only then did she agree to begin treatment

About NMOSD

NMOSD is an autoimmune disease affecting the central nervous system (CSN). The immune system reacts to normal tissues in the CSN and regards the tissues as foreign.

NMOSD affects fifteen thousand individuals, mostly females, in the United States. Its primary targets are the spinal cord and the brain. Recurring attacks may lead to muscle weakness, paralysis, and blindness.

Early diagnosis, such as in Aldelly’s case, afford the best opportunities for treatment. Misdiagnosis is common as the symptoms are similar to those of multiple sclerosis.

Gravitating Towards Reality

Aldelly initially coped with her diagnosis by trying to ignore it. She did not share her problems with others and even told them that using a cane was the result of an automobile accident.

It took a while but finally, Aldelly decided to share her diagnosis with her social media friends. She now feels that it allows her to face her physical limitations and helps others to understand as well.

Living with NMOSD

The disease is unpredictable, causing erratic movements in her limbs, numbness, tingling sensations, and incontinence. Adelly is thankful that unlike many others with NMOSD, she does not have problems with her eyesight. However, the disease has precluded her from sharing many activities with her children. Adelly calls it a roller coaster.

Family Support

Adelly is aware that stress causes her symptoms to become even more severe. Therefore, she meditates, works with a trainer, and is careful about her diet.

But she is especially thankful for the support from her family who live in the neighborhood. She is also grateful for the support she gets from social media as a way to bring people with NMOSD together.

One such person is Sumaira Ahmed. Sumaira was diagnosed with the disease when she was twenty-five years old. Sumaira is responsible for starting The Sumaira Foundation to bring global awareness to NMOSD as well as funding for education and support of caregivers and patients.

Sumaira’s foundation is one of several organizations that are creating support for the NMOSD community. These organizations are responsible for continued research and education about the disease. The full Cranston article is available here.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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