Posted by: The Sumaira Foundation in NMO, Patient.e, Voices of NMO
My name is Ashlee. Thank you for taking the time to read my story. I’m not really sure where to begin and I’ve never publicly shared my NMO story before but, here it goes…
In 2004, about six weeks after giving birth to my son, I developed my first symptom. One morning, I woke up and couldn’t see out of my right eye. I visited all the local emergency rooms trying to figure out what was wrong. I was constantly told by all the ER doctors that I was a 21 year old looking for attention. Fast forward one year later – it happened again but this time in the left eye. I ended up going to an ophthalmologist who informed me that I was probably going to be diagnosed with Multiple Sclerosis within the next ten years.
In November of 2005, I woke up completely blind! I begged and pleaded with my ophthalmologist to get a steroid treatment but unfortunately, he chose not to do that because he felt the study was too new and wouldn’t work. In desperate attempts to salvage my vision, I ended up finding a doctor who would give me a steroid treatments, but at that point, it was too late. Additionally, in December 2005, my mother became very sick. In order to be by her bedside, I put my health on hold. Sadly, I lost her the following month…
I decided to visit the Shands Hospital at the University of Florida. It was here where I saw an ophthalmologist who was 99% sure I had Neuromyelitis Optica. He immediately admitted me so I could undergo intravenous immunoglobulin (IVIG) but as my luck would have it, it was once again, too late. I will never forget the day my doctor sat down on my bed and told me that I had tested positive for NMO. I vividly remember looking at him, pleading, saying, “I’m too young to die.”
Soon after, I started a drug called Imuran. Even while on the new drug, I relapsed. This relapse was different. During this relapse, I couldn’t feel my right leg. It moved, but I didn’t feel it. I was rushed to the hospital where I underwent a procedure called plasmapharersis also known as plasma exchange (PLEX).
In December 2008, on top of dealing with the stressful nature of my debilitating disease, I decided to leave my son’s father; he was becoming verbally abusive and I could no longer bear it. I won’t lie, I was considerably stressed wondering how I would make it in life while being legally blind and caring for a 4 year old child all on my own but I’m a survivor and I was determined to make it.
Here comes the good news – I finally met the love of my life in 2009. In November 2011, I stopped my medication and attempted to have another child. I was nervous but it was worth it. In October 2012, w were blessed with a beautiful baby girl and in May of 2014, my husband and I exchanged vows.
NMO has changed my life in so many ways; I’ve overcome some very difficult, unforeseeable obstacles. Even though I’ve lost my eyesight, which so many take for granted, I’ve never allowed this disease to hold me back. Despite all my struggles, I feel truly blessed with my two beautiful, healthy children and doting husband. I’m also happy to share that in spite of losing a significant amount of vision, I’ve started my own photography business. Photography is one of my greatest passions and I’m so grateful that I am able to do what I love. Lastly, it is with great joy that I announce I have been relapse-free for 10 years! Let’s work together, find a cure, and help illuminate the darkness of Neuromyelitis Optica!
