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Kellin’s NMO Story – One Step at a Time; The Journey Starts Here

Posted by: The Sumaira Foundation in NMO, ON, Patient, TM, Voices of NMO

My name is Kellin. I am a 28-year-old South African NMO patient and this is my story…

Late in 2015, my father suddenly passed away. It was a shock to my system and I was not prepared for it.  In the months/years to follow, I experienced weird symptoms – which I now know were due to NMO.  

I suffered constant and severe headaches. Nothing seemed to work. My doctor at the time sent me for x-rays, thinking it could have been a pinched nerve in my neck. The outcome was inconclusive and I was sent to a physiotherapist for therapy. It felt like it was working; the headaches got better or so I thought…

About three weeks after my last visit to the physiotherapist, I was totally off balance and had the worst vertigo! My eyes got weaker and it looked as if I had a veil over my right eye and at times, would go black completely. 

I went from one doctor to the next with not a single one of them knowing what was really going on. I had probably also hurt my ankles about seven times due to being so of balance. In fact, one of the seven times resulted in having to wear a moonboot for sic weeks. 

A few weeks later, my right leg started to go numb and I felt stabbing pains from my lower back all the way down. I continued to work while dosing myself with pain medications. One of the doctors prescribed oral prednisone which helped a lot. I lost ALL control over my bladder and bodily functions. As you can imagine, it was was very embarrassing for me as I was only 26 years old. 

All of this went on for about three years. No one knew what was going on with me and every other person chalked it up to stress and/or being overweight. 

Fast forward to January 2018 – I had just started a new job at a new school as a teacher. On January 31st, I got up to use the restroom and collapsed because I had no feeling in my legs… I became paralyzed from the waist down.

My mom rushed me to the hospital where doctors sent me for more x-rays (FYI – no one thought to order an MRI). The doctor in the emergency room looked at my scans and based on the other symptoms I described, said it could be 1 of 3 things:

  1. Guillain-Barré syndrome (GBS)

  2. Multiple Sclerosis (MS)

  3. A slipped disc

I was officially freaked out. I had no idea what was actually going on. They sent me for blood work to rule out GBS and MS. Because the labs didn’t indicate either of those diagnoses, we went with slipped disc. I received IV steroids, additional pain medicines, and oral steroids. 

A few weeks passed and all of a sudden, the stabbing pain in my back and leg returned. I thought to myself, that it must be the disc acting up again so off to the chiropractor I went. She listened to my whole story and very quickly identified many red flags urging me to see a neurologist to obtain proper imaging. Rightfully so, she did not treat me. 

In late May 2019, I went to see the neurologist feeling very confused and very paralyzed. He eventually sent me for an MRI. After viewing the scans, the neurologist diagnosed me with transverse myelitis, stretching from C7-T11. I was so overwhelmed – I could not hold the tears back. He explained exactly what was happening and what was to come. He referred me to Chris Hani Baragwanath Academic Hospital for further treatment. I was given another round of prednisone and Lyrica. The pain in my legs was getting better and I could (kind of) walk again. 

The Chris Hani Baragwanath Academic Hospital, located in Johannesburg, is a public hospital where you have an appointment date but have to wait your turn before the doctor sees you which can take hours. By the end of June 2018, I finally got an appointment. After waiting a long time, I saw the doctor who could not believe what she was seeing. Based on the MRI scans, she said that I should be blind AND paralyzed but there I was, seeing and walking (albeit, not well). She ordered additional labs to test for NMO and prescribed me with more medicines – simply too many to mention!

One month later, I went back to see the neurologist. NMO was suspected but not confirmed because the previous MRI was unclear. On July 8, 2018, I was admitted to the hospital fore more tests and scans. I had 2 MRIs, a plethora of blood tests, and lumbar punctures. All of this happened in one week. I received daily IV steroids to treat the inflammation.

You have NMO.

I was even more confused, scared, angry, relieved than ever. The doctors were fascinated. They had never seen a case like mine before. Every doctor was present during rounds to see how I was doing. I was in the hospital for five days before being discharged. I was happy not only because I was able to go home to my AMAZING boyfriend who was with me through it all but also because I walked out! I felt very proud of myself.

I arrived in a wheelchair and was discharged walking out on my own. 

In the months that followed, I had good and bad days but everything seemed to be under control however, in October of 2018, I had another mild attack. My right eye went completely blind and my leg went numb again. I had to use a walker to get around. By the end of 2018, my doctors decided it would be better for me if they boarded me medically for six months so that I can receive therapy. In December 2018, three days before schools were to close, I resigned form my job as a teacher and put my health first.

The first six months of 2019 were HORRIBLE. I spent more time in the hospital seeing my doctors and getting therapy than ever but… it worked. I gained 60 kgs in three years and am still struggling to lose it but I know I will get there. 

In July 2019, I got a new job. I was feeling much better and I could actually walk on my own, unassisted. The people at work were very understanding and had compassion for me and my illness.

In October, I got engaged and on July 4, 2020, my husband and I got married. Yes, I had to use my walker on my wedding day but I embraced it. I am alive. I have good days and I have bad days.

Throughout all of this, my mother and husband were with me every step of the way. Five years later, my life is beginning to feel normal again. I take it one day at a time.

I am living with NMO. I have accepted it and I am embracing it.

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