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Tag: Journey New York

Denise

Neurofibromatosis Type 2

Destination: New York City

Travel Year: 2024

My Story


I had a normal life growing up and loved it. In college, I noticed my right ear was hearing things less. I graduated and was at my first job when I noticed that most of my hearing in my right ear was gone. I went to multiple doctors, but none could figure out what was wrong. When I returned from working as a missionary in Panama, I saw a doctor that scheduled my first brain MRI in 1995. That is when we discovered I had multiple brain tumors and was diagnosed with Neurofibromatosis Type 2.

I was living in northern CA and had a friend in southern CA studying to be a nurse. When I told her about my diagnosis, she said she had studied it in class and knew a doctor specializing in NF2. I thank God that I was connected to him to start treatment. My life revolves around NF2. At age 30 in 2000, I became deaf. Two years later I met my husband who was born deaf, and we have adopted 2 deaf boys. Through the years, I have had seven brain surgeries, gamma knife, and radiation to treat the tumors that keep growing. I also have had surgeries to remove tumors from my calf and knee.


“One doctor looked at my MRI and stated that I only had one more year to live (this was 29 years ago)…I am happy that I have gotten through each surgery even though some of the doctors said I wouldn’t make it. That I wouldn’t be able to walk. That I would be blind. But I am still here.”


I am deaf now and slowly dealing with more tumors. Headaches and dry eyes bother me every day. I can’t swim underwater and have lost some of my balance. Recently, I have had some vision loss and most likely will not be able to drive soon. I am thankful to Being Positioned for giving me a Journey so I can make some amazing memories with my husband while I can.
Being Positioned has given my husband and I something wonderful to dream about. I was told about this program through a friend and was nervous about signing up at first. It took a while for me to finally do something good regarding my disease. One surgery caused the whole right side of my body to be paralyzed. It took several months of therapy to move and walk again. The older I get; the more tumors grow. I am always thinking about one of my tumors doing damage that will change everything. After my most recent surgery, I decided to apply to Being Positioned and was thrilled to be chosen.

My Health


Daily Challenges

  • Deaf
  • Vision problems
  • Dry eyes + mouth
  • Headaches

Ongoing Health Issues

  • Balance issues (hard walking in straight line)
  • Brain fog
  • Numerous brain tumors
  • Shunt

Major Procedures

  • Seven brain surgeries
  • Gamma knife
  • Radiation
  • Two leg tumor removal surgeries

    Total Surgeries: 9

    Each person diagnosed with NF2 experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.


    To learn more about Rare Genetic Disorders, click below.

    Learn More

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    Crystal

    VON HIPPEL-LINDAU SYNDROME

    Destination: New York City

    Travel Year: 2024

    My Story


    My name is Crystal. I am a 44-year-old elementary teacher, currently in my 22nd year of teaching. I have Von-Hippel-Lindau (or VHL). It is a rare genetic disease and I lack a tumor suppressor gene that most people have. This leads me to have lesions in many areas of my body. For me it has been my brain, spinal cord, eyes, kidneys, pancreas, and lungs. Usually VHL is inherited, but there are some spontaneous cases. I personally inherited VHL from my mother, who inherited it from her father.

    I had my first VHL related surgery at age 20- which ruined my plans for a semester abroad in Costa Rica. It turned my undergrad degree into a 5-year endeavor. It has made me cancel flights and many travel plans. It has interfered with my time with my students quite a few times. As of today, I have had 10 brain surgeries, 1 kidney cancer surgery, 2 spinal cord surgeries, and 1 eye surgery. I have to take pancreatic enzymes in order to digest my food properly, and most recently I have become an insulin dependent diabetic. VHL also took my mother from me. She was only 67.


    “Despite all these trials, I still find myself valuing humor and positivity. Having issues like these makes things harder, but I try to make the choice every day to smile and have a good day. What is happening to me isn’t my choice, but what kind of person I am IS my choice.”


    Being Positioned is sending me to NYC this summer and I am so excited! My health concerns have not disappeared, but beginning to plan this adventure has been wonderful. I have spent most of my life not allowing myself to dream of much because my plans are usually ruined. However, aspiring for activities that I never allowed myself to even think of before has been amazing! I am so looking forward to staying in a nice hotel, Broadway plays, museum visits, and so much more! They have made every day a bit more exciting, as this trip is always on my mind!

    My Health


    Daily Challenges

    • Anxiety
    • Frequent scans + appointments while working full time
    • Fatigue from medication
    • Speech articulation

    Ongoing Health Issues

    • Require pancreatic enzymes to digest food properly
    • Difficulty regulating blood sugar
    • Balance problems
    • Nerve pain and/or numbness in certain areas from multiple surgeries

    Major Procedures

    • 10 brain surgeries
    • Kidney cancer
    • 2 spinal cord surgeries
    • Eye surgery
    • Currently on the 1st ever FDA approved targeted therapy for VHL

      Total Surgeries: 14

      Each person diagnosed with VHL experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.


      To learn more about Rare Genetic Disorders, click below.

      Learn More

      Continue reading