For FD-affected individuals, traveling to receive treatment or visit friends and family can become dangerous. Most people with FD cannot tolerate high altitudes and may pass out on airplanes without supplemental oxygen.
We make POC (Portable Oxygen Concentrator) units available to FD families to rent for little to no cost.
The Familial Dysautonomia Foundation has Sequal Eclipse units for use by FD families while they travel. These deluxe units deliver continuous or pulse oxygen.
FD families interested in obtaining one of these units should contact the Familial Dysautonomia Foundation to make arrangements.
To rent a POC unit, you must provide…
· a letter from a doctor indicating the need for oxygen and the flow rate required.
· credit card number and authorization to be used as a security deposit against damage or loss.
· Fee for shipping, unless you can pick it up in New York City.
· Information about the flight you will be taking, including route and duration.
· A physician’s travel form and a POC request and agreement form
Arrangements for these POCs should be made well in advance to leave ample time for shipping and familiarization. The Foundation does not provide 24/7 customer support, so it is essential that families become familiar with operation before travelling.
FD POC Units
All POCs are battery operated, and some can be plugged into electrical outlets to simultaneously run the unit and charge the battery. All come with a built-in or detachable cart. With spare batteries, a portable unit can run for many hours without requiring an electrical outlet, but heavy batteries can make travel more difficult.
There are two basic modes of operation for a POC: continuous and pulse. Continuous operation outputs a steady flow of oxygen, whereas pulse operation relies on the patient’s breathing to trigger a burst of oxygen. Some doctors recommend continuous operation for their patients who are prone to shallow breathing. Check with your doctor to see if you need a model that provides continuous operation. Battery life is much longer in pulse mode.
Insurance plans will pay for, or even provide, a POC rental if you have DME (Durable Medical Equipment) coverage. Even if you don't have DME coverage, many insurance policies will fully or partially cover the cost of oxygen rental for travel. Check with your insurance provider for the details of your plan.
The information provided in the Dysautonomia Foundation web site is intended to educate the reader about certain medical conditions and certain possible treatments. It is not a substitute for examination, diagnosis, and medical care provided by a licensed and qualified health professional. If you believe you, or your child, or someone you know, suffer from the conditions described herein, please see your health care provider. Do not attempt to treat yourself, your child, or anyone else without proper medical supervision.
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The FD Foundation does not offer medical advice. We always recommend that you contact the Dysautonomia Center (link here) or your personal physician.