Anything you can contribute will be received with immense gratitude!
Mariana and Selma
I was 22 when I was diagnosed with Neurofibromatosis Type 2. I went to the doctor for headaches, dizziness, and loss of hearing in my left ear. After an MRI of the brain and spinal cord, I was told I had NF2- a genetic disorder that causes tumors to grow along nerves throughout the central nervous system, including brain and spinal cord. It is a slow process but over time important nerves and structures get squeezed to death causing devastating symptoms. Although I had never heard of it before, 1 in 35,000 people are affected with this disease. There is no cure.
There was one other piece of news that I was given that day: I had numerous brain and spinal cord tumors. One tumor, in particular, was compressing my brain to one side and needed to be removed immediately. As I was being informed of this, the surgery had already been scheduled for me.
I remember being confused and a bit upset but it actually wasn't my focus. I had just gotten accepted to medical school and was well on my way to pursuing my big dream. I knew that this was not good news but I figured I'd be alright. I was young, I was tough, and I was on a mission. I had time and God was on my side. My main concern was being able to relocate to Philadelphia and start medical school in two months.
By the grace of God, the surgery went well and I was out of there in 8 days.
That was 17 years ago and I have been on the run ever since- doing what I could, while I could.
I completed medical school and residency and have been blessed to have been able to practice Emergency Medicine for 10 years despite gradually losing my hearing. I've been a lot of places, met a lot of people, saved a few lives, and laughed a lot along the way. What a joy and privilege it's been!
Over the years, however, I have had many things taken from me by NF2 and have always adjusted to try and compensate for the loss. I have had many surgeries and procedures to buy me time and keep me functional. I have had a tremendous amount of encouragement and support from family and friends. I have had people praying for me that don't even know me. I am sure this and the grace of God is how I was able to press on all these years.
Unfortunately, 2 years ago I was forced to resign from the practice of Emergency Medicine as there were no further adjustments I could make that would allow me to continue to work. In addition to deafness, I have developed bilateral vocal cord paralysis which prevents me from being able to speak or breathe properly. This required a tracheostomy tube in my neck. I also deal with chronic pain, loss of balance, inability to swallow, facial nerve paralysis, weakness, and many other symptoms.
I am being followed at the Neurofibromatosis Center at Johns Hopkins Hospital in Baltimore, MD. As of last month, I had my 10th surgery which involved removal of an enormous amount of tumor in my abdomen and pelvis, hysterectomy, and bowel resection requiring a 33-day hospital stay. I am now at home. I am unable to swallow or speak right now and am on IV nutrition along with a lot of other medications to help me recover. I have a visiting home care nurse. I also have my mom (who has not left my side for a minute) and lots of family coming by around the clock to help me with life. I am very happy to be home. We have a joke in my family that I have nine lives and tend to recover like Wolverine. LOL!
Even so, this was my biggest surgery yet. I have been severely compromised. The road to recovery will be long and hard. I am tired. A lot of the time, I do not want to go on. Then I hear a voice inside- maybe God or maybe that fearless, young Nissa from days gone by, that says, "There is still another mission. Another big dream. It's not over yet". Then I smile.
This page was put together by my loving cousins to help me share my story and help raise much needed funds for the incurring medical bills and medical care costs. Whatever you can give will be greatly appreciated. And, if nothing else, please send a prayer this way.
For more information and how you can join the fight against Neurofibromatosis, please visit:
Thank you and God bless,
"Be strong and courageous. Do not be terrified; Do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9
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