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Stories of NF: Alexis P.

By April 3, 2019December 5th, 2023NF1, Story of NF

I was first diagnosed with NF1 when I was five years old. I have had five surgeries. I have had countless test and procedures. I am in pain constantly because I have tumors in my brain, spine, neck, legs and pelvic. Most of the time, the pain does not get the best of me.

I have gotten used to being talked about and mistreated. I am adjusted to going to the doctor every other week. Most people think it is hard, and they are right, but this is all I know.

I have altered all my plans for my life. I do not have a 9-to-5 job. I had to apply for disability. I have eight doctors. I have to find ways outside the traditional 9-to-5 job. I look into organizations that are sensitive to the disability I have. God have opened up doors, especially for writing and speaking. I organize everything around my appointments. I do not have a car because I have an optic glioma brain tumor. It causes a lazy eye. I found other resources to get around to lead group, speak and share my story. I feel like it is an answer to alternative living.

I deal with my NF1 by giving back. I created an NF blog to help others with the condition. I want people with NF to be encouraged. I want children to be able to see me as a person that has overcome.

I am apart of Twisted Storytellers in Detroit. I will get an opportunity to share my story. I want everyone to know we have feelings. I have overcame too much in my personal life. I have graduated grad school. The doctors said I would not make it. I would be in special education classes. But, I can live on my own. I can pay bills. I can read, write, and run. I have an Associate’s, Bachelor’s and Master’s Degree. I majored in Counseling and I have experience in social work. I did not let anyone stop me. I was getting bullied every day. I was lonely not to have friends. I was cutting myself for a long time. I had other addictions because of afflictions in my life. However, I fought. Jesus Christ is the reason I am where I am at today. I did not do any of this on my own. Jesus is my reason for getting up each day. I believe I will change the lives of many people.

I am a person that loves to write. I have my own NF blog. I have other blogs as well. I am a writer, counselor and speaker. I am extremely happy when I do these things. I can write a curriculum to teach women and children about self-esteem. I have written a book. I am looking to self-publish through Amazon. I am working with the Morris group to start a new group to help heal emotional wounds. I am also working with Twisted Storytellers. I have not shared my story yet but hopefully soon I will be ready. Twisted Storytellers is an organization that allows men and women to share their story.

I want to help whoever I can. I want to help small children understand their emotions about NF. I am trying to write a children’s book about NF. I already started one for teens. Soon, I will start writing one for children under ten.

I love Jesus Christ. He motivates me to do all that I do. I can not do anything without Jesus. My faith has gotten me to confidence, resiliency and a love for others who are suffering. I will continue to allow my light to shine so others may shine brighter than myself.



Dream vacation Seattle, WA

Motto Psalms 91. God’s protection over my life.

Superpower To fly