Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
Ghanaian-born and UK-raised, I was diagnosed with aquaporin-4 positive (AQ4+) neuromyelitis optica spectrum disorder (NMOSD) in May 2023, which was completely life-changing, to say the least!
For me, NMOSD was characterized by inflammation of my spinal cord and parts of my brain, but it is being managed with steroids and immunosuppressants to avoid a relapse. However, ongoing symptoms I manage include limb weakness; vertigo; mobility issues with balance and walking further than 50 meters – all of which is made worse when I’m exhausted.
I experience nausea, coughing, hiccupping and vomiting (when overwhelmed with social interactions due to fatigue so I make sure to compensate when I am tired – for instance, I’ve learned that chatting with someone is more debilitating on one side of my peripheral vision, thanks to how the inflammation happened in my brain. Surprisingly, although my prescription definitely got worse and my eyes became sensitive to light, I am grateful to not have had optic neuritis: it’s scary enough knowing you are deteriorating but not knowing why, without being able to see properly!
Things are definitely improving though: I practice rapid head-turning everyday so thankfully the vertigo is reducing, although sometimes the severity of the vertigo can flare-up, this is less frequent and happens gradually; I remember the days where just tilting my head slightly was super disorientating. And thanks to organizations like The Sumaira Foundation (TSF), I found a community where we could openly and honestly talk about our experiences with this rare disease.
This experience inspired me to help other patients by spreading awareness by becoming a TSF Ambassador myself – especially after my podcast episode featured TSF’s very own Founder and Executive Director, Sumaira, to discuss our transatlantic experiences navigating an autoimmune disease.
