The Hypersomnia Foundation believes it is important for person(s) who have idiopathic hypersomnia (PWIH) to carry medical alert information to help prevent potentially inappropriate treatment in an emergency situation. Medical Alert information can also be important to have on hand if you are awakened by security or authorities if you fall asleep in a public place or while napping in your car. We review several options below.
Please note that the HF does not endorse any specific cloud storage services and does not guarantee the security of your medical information. The decision to share your medical information, and your selection of a cloud storage service, are personal in nature and are made at your own risk.
Medical Alert Cards
The Hypersomnia Foundation is pleased to provide two Medical Alert Card versions, designed expressly for PWIH. Many people (including medical personnel) are not familiar with IH, so the information on our Cards may prevent possible problems in an emergency situation.
Our Medical Alert Cards are designed to:
- Educate emergency medical personnel about the neurologic disorder IH and the potential for its symptoms and medicines to affect anesthesia and other medicines.
- Allow PWIH to list:
- Emergency contact information.
- Brief medical information (including their IH medications).
- Links to additional information on secure cloud services, such as Dropbox, Google Drive, or OneDrive. Such information may include one’s personal Anesthesia/Hospital Care Plan, and the Hypersomnia Foundation About IH page, which includes links to IH medical review articles and other IH resources. (Note that the QR code on the larger HF medical alert card already directs to the About IH page).
Our Medical Alert Cards are free to download in small and large versions (fillable PDF files that you can print). The small version is the size of a business card and is easily carried in a wallet, purse, or other card holder. The larger version has room for additional information and a QR code linking directly to IH information, and it folds to the size of the small card.
You can also order pre-printed small cards to distribute in your medical practice, support group, or health fair (by completing this form).
Smartphone Medical Alert Information
We also recommend setting up the Medical Alert feature on your smartphone, which can be seen by emergency medical personnel even if your phone is in lock mode. This feature is built-in and available on both Android and iOS.
Android
- Android also has apps (Medical ID, ICE – In Case of Emergency, Medical Contact Card) that can present medical ID information on the lock screen. These may provide additional features and information beyond the built-in capabilities.
iOS
Wearable Medical Alert ID
Another way to alert emergency personnel is by wearing a Medical Alert ID, such as a bracelet, pendant, or charm for keychains/etc. The ID can present limited emergency information, such as contacts and medical conditions like IH.
Many Medical Alert ID providers also offer a subscription service. The service provides a telephone number or URL accessible by emergency responders. The person who has IH can fill out an online profile with additional medical information and can include documents such as their personal Anesthesia/Hospital Care Plan and links to the Hypersomnia Foundation’s About IH page, which includes links to IH medical review papers and other resources (providing additional information on the condition).
Pros: Already have this set up; just fill out your information, which can be accessed with phone number.
Cons: Usually costs money on an ongoing basis.
A free alternative to subscription services is using secure cloud storage, such as Dropbox, Google Drive, or OneDrive, in conjunction with a URL shortening service like bit.ly or TinyURL:
- Store documents with your medical information in a folder on the cloud service. Documents could include a Hypersomnia Foundation medical alert card, one’s personal Anesthesia/Hospital Care Plan, IH medical review papers, or any other information you choose.
- Important: Make this folder publicly available; otherwise medical personnel will not be able to access it in an emergency. The URL will be long and contain random characters, so it is very unlikely that anyone would be able to access it without your providing the link.
- Convert this long url to a shortened URL and add that to the information engraved on the medical alert ID (such as your name, address, or emergency contact number).
Pros: Free, other than cloud storage costs; may be more flexible.
Cons: More labor-intensive and possibly more error-prone.
These wearable medical alert items can be found on a variety of online sites, such as:
- MedicAlert (one of the pioneer providers of medical IDs)
- MyID (has a free subscription tier)
Wearable medical alert items are also eligible for reimbursement as a qualified medical expense if you happen to have a Flexible Spending Account (FSA) or Health Savings Account (HSA).
If you or your family has financial hardship that makes it difficult to afford a wearable medical alert, the National Organization for Rare Diseases sponsors a patient assistance program. Please see this linked document for more information about the program and how to apply.
Always Carry a Medical Alert Card as a Backup!
Even if you have a smartphone medical alert or a wearable medical ID, we recommend that you also always carry a Medical Alert Card in case your smartphone is damaged or lost in an accident or if your wearable device is damaged or removed by emergency medical personnel. We encourage everyone with IH to download one of our Medical Alert cards. Simply fill out the Card and carry it with you everywhere. It’s free, it’s easy, and the life you save may be your own!
Consider Donating to the Hypersomnia Foundation
If you or a loved one find our free cards and information about medical alerts useful, please consider making a donation to the Hypersomnia Foundation today. We are a nonprofit organization, dependent on donations from people like you to help us fulfill our mission of improving the lives of people who have IH and related sleep disorders.