We are excited to announce that Patient Worthy’s award-winning podcast “Wait, How Do You Spell That? A Rare Disease Podcast” is back with a new episode. This week, Colby is sitting down with a mother and daughter rare disease advocacy team: Nell Choi and Dr. Maggie Kang. Nell lives with neuromyelitis optica spectrum disorder (NMOSD). The conversation is all about learning to be your own advocate and reframing your own perspective after being diagnosed with a life-changing rare disease.
You can expect regular episode releases to return for the foreseeable future.
Check out the episode below:
If you want to save this one for later, you can also listen to the episode at this link.
About Neuromyelitis Optica Spectrum Disorder (NMOSD)
Neuromyelitis optica spectrum disorder (NMOSD) is a term meant to include both neuromyelitis optica patients and those that lack the APQ4 auto antibody but still present similarly otherwise. This disorder is also known as Devic’s disease. It is characterized by inflammation of the optic nerve and spinal cord along with destruction of the myelin sheath, an insulating, protective layer surrounding nerve cells. It is considered an autoimmune disease in which the immune system mistakenly begins attacking parts of the body. It is frequently associated with other diseases, such as viral infection and antiMOG associated encephalomyelitis, the latter of which can be a direct cause in some cases. Symptoms include blindness, urinary incontinence, spastic paralysis of the legs and arms, reduced sensation, and overall muscle weakness. Symptoms can be treated, but many patients are left with a degree of impairment. To learn more about neuromyelitis optica spectrum disorder, click here.
Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a journey to share, reach out to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.
