• Wix Facebook page
  • Wix Twitter page


P.O. BOX 17679


NW4 1WS:

Email: Committee@fd-uk.org

UK registered charity number 285399

All information contained on the familialdysautonomia.co.uk website is intended for informational and educational purposes. The information is not intended nor suited to be a replacement or substitute for professional medical treatment or for professional medical advice relative to a specific medical question or condition.


We urge you to always seek the advice of your physician or medical professional with respect to your medical condition or questions. As a recipient of information from this website, you are not establishing a doctor/patient relationship with any physician. There is no replacement for personal medical treatment and advice from your personal physician.

To read our GDPR Policy and Privacy Policies Please Click Here

Flying Protocol


The following protocol has been taken from the

"FAMILIAL DYSAUTONOMIA" A manual of Comprehensive Care Fith Edition 2009


Prepared by The Dysautonomia Center

In conjunction with The Dysautonomia Foundation


In general


• Patients should be well rested prior to take off.

• Avoid overeating on the plane and definitely avoid carbonated beverages. Keep the gastrostomy feeds smaller than usual.

• Vent the gastrostomy tube during times that the cabin is changing pressure. That starts when the cabin doors close until cruising altitude is reached and then prior to descent.


• Lubricate the eyes frequently as airplane cabins have low humidity and there are many air vents blowing-- even one from another row can blow across and be a problem.

• To prevent drops in blood pressure, the individual should walk around the cabin and the bladder should be emptied frequently.

• After landing, blood pressure may be unstable (especially if descent has been rapid or if the child is known to be prone to low blood pressure) so do not let the child walk any distance. A wheelchair should be available.

• Supplementary oxygen should always be available and using the pulse oximeter is a good idea. Put on oxygen if her saturations go below 95%..


If you think the flight or trip is exciting to her then you can give the Valium--2.5 mg should be given 6 hours prior to flight and then another 2.5 mg 2 hours prior to flight.

Have a good time