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

Making Travel Plans

When Crystal first applied for her Being Positioned journey, it was clear she was someone special. We spoke with her medical team and were amazed by the outpouring of love and admiration they had for her. Nurses eagerly took turns on the phone, each wanting to tell our Selection Committee just how deserving she was of this opportunity. After an incredible recovery from her 10th brain surgery, it was clear Crystal needed to be celebrated—and what better way than with the trip of a lifetime!

Even though Crystal lives in Rochester, NY, she had her heart set on visiting New York City for her journey. She shared her excitement about seeing a live TV show taping and experiencing a Broadway show, both long-standing dreams on her bucket list.

A huge fan of Harry Potter, Friends, and great food, NYC was the perfect destination to bring her passions to life. When it came to transportation, Crystal surprised us by suggesting a train ride instead of flying. She was new to train travel, and we loved the idea—it added an extra layer of adventure and allowed her to enjoy the scenic views and a relaxing start to her trip. Crystal’s wish list for NYC was extensive, including iconic landmarks and a stop at the Harry Potter Store, but at the very top was attending a live taping of The Tonight Show. We reached out to NBC, and they generously provided VIP tickets for Crystal and her partner Eric! With her itinerary set and a major dream about to come true, Crystal and Eric were ready to embark on the adventure of a lifetime.

“EVERY SINGLE day of my life is filled with coordinating and going to appointments, making sure I have tests at the appropriate intervals, dealing with results of those tests, being symptomatic because of something VHL related, or recovering from a surgery or procedure. Planning my journey finally allowed me to focus on something fun instead. Of course, I couldn’t ignore the things I previously mentioned, but I was able to have my journey to think about as well.”

Travel Docs

Being Positioned created a 7-day itinerary for Crystal to eat, explore, and sightsee in beautiful New York City.

Destination New York City

My trip to NYC included so many amazing things! On top of seeing the sites and all of the delicious food, we were also able to take in a Broadway play and a taping of The Tonight Show with Jimmy Fallon! We also visited the 9/11 Memorial and paid our respects, went to The Friends Experience, had a couple’s massage, and saw the city from the Top of the Rock and the Empire State Building. We rode the train to and from NYC, and this is a mode of transportation that I highly recommend. Being Positioned planned and organized all aspects of this trip perfectly! All we had to do is wake up in our fabulous hotel and refer to our day’s plan on an app. From there, we just had to follow the plans and click on the maps or attached tickets if necessary.

Completed Activities

Empire State Building • Top of Rock Observatory • The Tonight Show Taping • Broadway Show • Boat Tour • The Friends Experience • 9/11 Museum • The Metropolitan Museum

“Not having to figure out what to do every minute of every day was wonderful. That in itself was a vacation! Also, not having the stressor of how to pay for all these things took such a load off my mind. Being chronically ill, finances in all their forms are a constant worry, and I would never be able to pull off a trip like this myself.”

Within 48 hours of returning home from my journey, the scheduled appointments and scans started up again. However, I am going to them with a less anxious mindset. My young and healthy self-loved to travel, and I have been so worried constantly about maintaining my own life that I forgot what traveling makes you feel like. It is nice to be reminded of how big and wonderful the world is, and how many cool things there are to see and experience.

All our thanks go to Christina and Michaela for planning an experience that will always and forever be remembered fondly! My cup runneth over!

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.

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