Attending Universal’s Halloween Horror Nights with a disability
Accommodations allowed me to enjoy the trip, despite PNH symptoms
One experience that brings me the most joy is going to amusement parks. I love the atmosphere, including the smell of funnel cake, the screams from people on rides, the music, and the scenery. I’ve gone to most of the parks on the East Coast and love them all! But going to an amusement park means a lot of walking, and since my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH), I worry if my body can keep up.
I recently went to Universal Studios in Orlando, Florida, for its annual Halloween Horror Nights. I’m a huge Halloween lover, and this event is one of my favorites. Before my husband, John, and I left for this trip, I planned to accommodate my PNH needs as best I could.
In the days before leaving, I made sure to rest and drink plenty of water. I brought lightweight clothing for the Florida heat, since overheating can make me suddenly ill. I also packed the Ultomiris (ravulizumab-cwvz) patient safety cards I received from the pharmaceutical company that develops the medication.
When choosing a hotel, I looked for something affordable yet convenient and found an option that was a 20-minute walk from the park entrance. I love taking long walks, so normally, this distance wouldn’t have been an issue. However, my body is still adjusting to switching from Soliris (eculizumab) to Ultomiris over the summer, and my shortness of breath and fatigue have been bothering me.
I hesitated to make a choice, but eventually decided I didn’t want to deal with the headache of finding and paying for transportation to and from the park. John and I planned to walk there from our hotel, and if I had trouble getting back after spending all day in the park, our backup plan was to request an Uber.
At the park
On our first day at Universal, the walk to the park wasn’t too difficult, and once we arrived, I rented a wheelchair. John was wonderful about pushing me around the whole day without complaints. Sitting and saving my energy allowed me to make it through the whole day. According to our step trackers, John took about 20,000 steps that day while I took 11,000. Although I still walked a lot, the wheelchair provided me some much-needed relief.
Plus, I had fun going through a haunted house in a wheelchair. Not being able to control how fast or slow I was moving added more suspense to the scares!
In addition to the wheelchair, I requested an IBCCES Accessibility Card (referring to the International Board of Credentialing and Continuing Education Standards), which is designed to help people with disabilities get accommodations at certain parks and attractions. I brought a letter from my doctor explaining that I need frequent breaks and rest because of my PNH symptoms.
Thankfully, I had no issues being granted the card. It allowed me to check in at rides, note the wait time, and come back after that time had elapsed. So I still waited the same queue time as everyone else — I just didn’t have to physically stand in line. This gave me the opportunity to eat, hydrate, and sit in air conditioning while still being able to enjoy the attractions.
I’m grateful I received disability accommodations, as well as John’s help, which enabled me to still take part in Halloween Horror Nights and the joys of life. We created amazing memories on our trip that I know will get me through future bad health days.
For other patients out there, don’t miss out on experiences because of PNH. Look for accommodations, prepare in advance, and most importantly, have fun!
Note: PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of PNH News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to paroxysmal nocturnal hemoglobinuria.