Travel Tips for Families Affected by Sanfilippo Syndrome

Travel Tips for Families Affected by Sanfilippo Syndrome
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Traveling can be challenging for people with Sanfilippo syndrome, depending on the severity of symptoms and the nature of travel.

Here are some tips to help you travel safely if a member of your family is affected by Sanfilippo syndrome:

Before travel

Planning ahead can help minimize the last-minute rush. While planning, consider factors such as who the patient’s primary caregiver will be during travel. Some airlines, including Air Canada and WestJet, have a “one person, one fare” policy that allows for free domestic travel of an attendant. You should confirm your eligibility with the airline company beforehand.

You should also consider whether the patient will need a wheelchair and how they will access needed areas such as a restroom. If the patient will be using a wheelchair during travel, notify the airline beforehand to make the ground and on-board crew aware of the patient’s needs.

Advance seat selection can help patients get seats that are comfortable for them. Although most airlines offer window seats for people with disabilities, it may be possible to secure an aisle seat that allows easier transfer from the seat to a wheelchair, which would make getting to the restroom easier during a flight.

A pre-travel medical assessment may be useful for some patients, as well as discussing with the doctor the challenges of the destination such as the local weather, altitude, and access to medical care and wheelchairs.

During travel

You should carry with you essential paperwork such as a health insurance card, travel insurance, and a physician’s letter stating any medical equipment or medication needed during travel.

If the patient feels unwell at any time during a flight, alert the cabin crew immediately. The plane may be able to land at the nearest airport to access medical help if the situation is serious.

At the destination

You should make sure that you and the patient are prepared to deal with the climate and environment at the destination. Pack appropriate clothing and plan activities that will not be too strenuous for the patient. Knowing the locations of local clinics would also be helpful for timely medical care or access to equipment, such as wheelchairs or motorized scooters.

 

Last updated: Feb. 3, 2020

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Sanfilippo Syndrome 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.

Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Emily holds a Ph.D. in Biochemistry from the University of Iowa and is currently a postdoctoral scholar at the University of Wisconsin-Madison. She graduated with a Masters in Chemistry from the Georgia Institute of Technology and holds a Bachelors in Biology and Chemistry from the University of Central Arkansas. Emily is passionate about science communication, and, in her free time, writes and illustrates children’s stories.
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