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Holidays and Rare Diseases

Last updated: December 2022

Holidays with a rare disease can be challenging, particularly regarding energy, diet, and disability accommodations.

Holiday stress with a rare disease

Balancing energy and stress levels during holiday events is a common challenge. Many families prepare their home and at least the main entrée for the meal, with guests providing side dishes. However, this remains quite taxing on the host, especially if the host has a chronic illness.

To remedy this in my family, my parents and I have agreed for events to be hosted at my house. In exchange, my parents prepare the meal freeing me to focus only on cleaning my home. This way, neither party is responsible for cooking and cleaning. In turn, this reduces the energy and stress demands on both parties. Or we opt to enjoy a meal at a restaurant instead. Others also choose to have meals at their homes catered. However, this can prove to be a rather expensive practice.

Dietary needs and restrictions

When people have special dietary needs, it can be helpful to ask the host to include specific items in their prepared foods. If this isn't an option, a person with dietary needs might offer to provide the main entrée. I’ve found this is often eagerly accepted by the host as it removes stress from hosting a meal. Or a person with dietary restriction may prefer to bring their own safe foods to eat while other guests eat the host-provided meal.

Preparing for air travel

Disability accommodations when traveling might include arriving at the destination, places to visit, and lodging. Researching travel options and places ahead of time can reduce the stress of time constraints and booking limits surrounding holiday dates. This also allows for early accommodations to be made, such as airport wheelchairs, wheelchair-accessible transportation, etc. It is also helpful to confirm the arrangements again closer to the dates needed. This helps to reduce possible last-minute issues.

Review TSA guidelines

When flying, reviewing the Transportation Security Administration (TSA) requirements for medications and medical supplies is helpful. Carrying a printed copy can help if a TSA agent is not aware of disability accommodations provided per TSA guidelines. If needed, ask to speak to a TSA supervisor. TSA pre-check can also increase security screening ease by reducing wait times and requirements such as removing shoes, jackets, etc. TSA pre-check does require submitting an application with a fee and an in-person appointment.

Travel insurance

Buying travel insurance can help protect against unexpected costs. This coverage can include medical expenses, lost/delayed baggage, missed flights, trip interruption, and cancellation to name a few. Travel insurance is available for domestic and international travel.

What have you found to help with holiday events when living with a rare disease?

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