In 2006, prompted by our members, the Spondylitis Association of America conducted a two-year extensive search of the medical literature to find out to what degree first responders were aware of and trained in the special handling and care needs of individual with spondylitis in an emergency setting. The main concern, of course, being the fusing in the spine in those with ankylosing spondylitis (and in some with other forms of spondylitis, with spinal involvement) that makes them more susceptible to spinal fracture both after a trauma, and even in the course of being treated and moved by first responders.
As a result of this research, it became clear that no such training existed; the need was immediate. We set to work to develop a continuing educational training video in 2008, completing the project in the next year. Today, the training video has been distributed to hundreds of fire houses and emergency departments.
SAA receives no government funding and relies on the
generous donations from individuals to create and maintain the programs and
services aimed at improving the futures of the 2.7 million Americans affected
In an emergency, time and accuracy are of the essence. A study of emergency department admissions found that 13,200 cases per day are unnecessarily complicated by the lack of timely, accurate personal and medical information regarding the individual being admitted.
Here are some tips to ensure that emergency medical providers will have the information they need to provide you with the safest and most effective care in an emergency situation, even if you are unconscious and can’t communicate that you have AS, or another form of spondylitis with spinal involvement.
Consider wearing medical identification “jewelry/tags” since emergency medical personnel are trained to look for these items.
“Brittle Spine Disease” and “Ankylosing Spondylitis” inscribed on the tag will alert the EMTs to your special situation.
One paramedic has suggested inscribing the term: “Do not use standard spinal precautions.”
Consider carrying a medical information card in your wallet.
The card could include vital personal medical information, such as any conditions, and any medications you take. This is especially important if you are taking medication that lowers your immunity.
Carry the card in your wallet next to your driver’s license and health insurance card. Be sure that it is legible to the average reader.
Consider including an ICE contact in your mobile phone.
List your ICE (In Case of Emergency) contact in your mobile phone. Emergency personnel are trained to recognize the acronym “ICE”. Be sure that your ICE contact is aware of your medical needs.
For smart phone users who lock their phones – You can set your Emergency Medical ID to have it be accessible from your locked screen, without needing your passcode.
You will configure and enable this option through your “Health” app. Please see https://support.apple.com/en-us/HT207021 for instructions.
Most versions of Android do support lock screen apps such as this, though not all do. Please look into your particular phone to find this option.
Distribute this free training video to emergency first responders in your community!
This video provides the education and training to ensure that all emergency first responders, including emergency medical technicians, paramedics and fire and police safety personnel have an opportunity to learn the proper and safe techniques in the care and handling of individuals with spondylitis.
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