13 Tips for Travelling with a Person with Prader-Willi Syndrome

by Rosemary Hegner

Rosemary’s son Bradley has Prader-Willi Syndrome. Having traveled together to Disneyland, Rosemary shares her tips on how to travel with  someone with anxiety and a short attention span who is used to routine and structure in order to manage their symptoms.

When Bradley turned 21 he had a trip to Disneyland on his wish list. His wish came true but travelling with someone with anxiety and a short attention span who is used to routine and structure to manage his symptoms, travel presented some challenges.

Prader-Willi Syndrome (PWS) is a rare and very complex non-inherited genetic disorder that affects 1:15,000-20,000 births and is associated with anomalies to chromosome 15 – there is currently NO cure. PWS causes altered growth patterns and development with associated cognitive disability and obsessive eating patterns. People with PWS have many symptoms including speech difficulties, low muscle mass and tone, impaired cognition & short attention span, anxiety and the well-known insatiable appetite.

These symptoms can prove challenging when travelling so Rosemary is sharing her tips. 

Here’s 13 Tips for Travelling with a Person with Prader-Willi Syndrome

  1. This is all about a holiday for the person with PWS so, include them in the planning.
  2. Shorter holidays work better due to disruption and therefore, the person with PWS will cope better.
  3. When travelling through airport security, seek out the assistance of airport personnel rather than trying to do it yourself.  I was pulled aside for a swab test and as Brad is 21 they were not happy for him to loiter.  When I explained the situation they provided the above advice.
  4. Where possible travel in the bulkhead area of the aircraft as this provides an ability to manage the boredom & behavioural issues with a little more confidentiality.
  5. Position your special person in the seat furthest from the isle, as this will avoid any wandering if you fall asleep.
  6. Pre-order meals for on board the aircraft and as soon as you board, identify yourself to the crew and request that additional items are not supplied with the pre-ordered meal.  Often additional bread and snacks are provided.
  7. Always escort the person to the toilet, as the galley is adjacent to the amenities and people with PWS are quicker than you think.
  8. Try to book somewhere where your person with PWS has their own room (time out space).  We used an air B ’n B apartment as most hotel rooms had adjoining rooms but still had a front door for ‘escape’ for food seeking – Food seeking increases significantly when away from routine.
  9. Prior to the holiday prepare the person with PWS with all the information about the holiday destination as this will build excitement but reduce anxiety.  DO NOT schedule all of your time.
  10. Try to only do one full activity each day.  People with PWS tire easily, and this is particularly true when they are out of their usual routine, weather is hot or humid and if more activity than usual is expected.
  11. Make sure you adhere to the food security principles which include reassurance that the person with PWS will NEVER MISS OUT one of their meal options.
  12. Remember, it is ok to break the rules occasionally about the type of food eaten on holidays, but make sure you are very clear that it is a special occasion and that more exercise will be required.
  13. Have fun and take lots of photos. We have had these made into a photo book for Brad to share with his friends and to keep as a lasting memory of his holiday.

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