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Sudden withdrawal of treatment causes a rapid escalation of symptoms which can be life threatening. Memory deficits and drowsiness can cause you to miss a dose or accidentally take two doses. Using organizers and reminders for medication can help you avoid overdoses or missed doses.
With a rare disease it is sometimes difficult to determine when you should go to an emergency room. Chances are, the emergency room physicians will not be familiar with your disease. The emergency room is designed for trauma, system failures, heart attacks, injuries, overdoses, and other life-threatening scenarios. It should not be used for pain management. Laws have restricted the prescription and use of scheduled drugs.
It is always best to contact your physician first. However, if you call after hours, a physician’s answering service may tell you to go to the emergency room if it is a true emergency.
Go directly to the emergency room (or call 911) if:
w You have taken more than the recommended dose of medications.
w Extreme drowsiness.
w Sustained spasms that do not respond to medication.
w You have missed more than one dose of medication and are experiencing withdrawal symptoms.
w You have an unusual or allergic reaction to a new medication or IVIG or plasmapheresis treatments.
w You have a malfunction of your baclofen pump.
w Persistent chest pain, especially if it radiates to your arm or jaw or is accompanied by sweating, vomiting, or shortness of breath could indicate a heart attack.
w Severe heart palpitations.
w Persistent shortness of breath or wheezing.
w Loss of balance or fainting.
w Falls with injury.
w Difficulty speaking, altered mental status, or confusion.
w Weakness or paralysis.
w Sudden, severe headache.
w Seizures without a previous diagnosis of epilepsy.
w Severe pain, particularly in the abdomen or starting halfway down the back.
w Repeated vomiting.
w Intestinal bleeding.
w Head and eye injuries.
w Loss of vision.
w Broken bones or dislocated joints.
w Deep cuts that require stitches.
w Severe flu or cold symptoms.
w High fevers or fevers with rash.
It is crucial to carry your medical information with you.
Everyone needs at least one emergency medical contact. It may also help to have an emergency medical alert bracelet available through these sources or through your local pharmacy. There are many online stores offering customizable tags and USB drives to store your medical data on.
If you are prone to falls, live alone, are home alone often, have mobility limitations, or have diabetes, it is a good idea to have a medical alert system.
MEDICAL APPS FOR YOUR PHONE
Record a message with the most critical medical information that plays immediately upon opening or at the push of a “PLAY’ button. No time is wasted looking through all of the data stored and the owner can give EMS providers instructions on how to use the smart-ICE app more efficiently! Smart-ICE4family stores data for up to (8) profiles.
Provided by the American Heart Association. This downloadable app provides quick, concise and clear first aid and CPR instructions from a user’s smartphone that can help a user save a life in the event of an emergency. Includes 34 videos and 46 high-resolution illustrations.
One-button connects you directly to the Life Alert Monitoring Station and alerts an operator when you need assistance. The operator has all the medical and other important information to quickly notify authorities or loved ones.
Once activated, TrackerAssist immediately informs your loved ones or friends that you require urgent assistance by sending an emergency alert together with a map of your current location via either email, SMS message or both.
The 5Star Service app provides help at the touch of a button. Get immediate access to their NAED Certified Response Agents trained in CPR and other emergency procedures. Agents will be able to confirm your location and evaluate the situation, connect you to a live registered nurse, dispatch emergency services, and get you the help you need.
Puts your emergency health information on the lock screen of your phone so EMTs can get it as quickly as possible, and by working with Smart911™ so that if you call 911 while in a Smart911-enabled community 911 operators get your medical information automatically.
Have important emergency information available at a glance on your iPhone or iPod touch's wallpaper. Let an emergency responder find your ICE (In Case of Emergency) info quicker--even if your iPhone uses the security lock. The details you set are instantly viewable for anyone who finds your iPhone. No searching your address book, private emails, or other places to find important medical conditions or who to call--"Emergency Contact" is faster, and protects your privacy too.
w MedicAlert PrEMISE® for Emergency Responders (Android and iPhone)
Founded by the American College of Emergency Physicians (ACEP) and MedicAlert Foundation®. The application can be used by first responders to access their patient's medical record at a moment's notice.
w Medical ID (ICE): Emergency For Android.
This profile enables quick access to vital information such as your allergies, blood type, medical contacts, etc. that are essential to attending first responders, medics or medical staff having to take action. Quick access to medical information from the lock screen. Emergency alert that allow to send an SMS message (along with your location) in one click. Security mode to protect your data. Direct emergency contacts calls from the lock screen without having to unlock.
w Man Down App (iPhone and Android)
The ManDown App sends immediate alerts in case of an emergency or injury. Enter the contact information for your family, friends and colleagues. If you have an emergency, they’ll get notified via text, phone or e-mail. Once the Mandown app is activated, it continuously monitors the phone’s movement. The default setting is that if the phone is motionless for 30 seconds, then a pre-Alarm warning will start. If the phone is not moved within another 30 seconds, then the Full Alarm mode is activated. In the Full Alarm mode the phone sends out a local, audible alarm. The phone will also send out a text, email and phone call to selected recipients. This message will also contain the GPS location of the person in distress.
If your phone is found on you, emergency personnel will be able to view your vital stats, turns your phone into an SOS light beacon, sends out an emergency text message or email with your GPS coordinates, or you can learn how to treat different injuries.