Heat Kit Components™
HEAT Kits will arrive on a carabiner. The carabiner allows you to hang the kit near your door for easy access. The ring attached to the carabiner was chosen so that you can remove and add pages as needed.
In addition to the contents listed below, the package will include a template describing how to video tape your provider explaining the rare disease and the way it shows in you personally. Instructions for how to save this on a USB (thumb drive) for portability will be provided as well. Ideally this will be the core specialist on the patient care team. The purpose of this recording is to provide it to an emergency responder so that they can learn about any nuances specific to your disease.
HEAT Kit Components
- Summary page of each disease for health care providers (source: NIH Rare Disease Center)
- Medical alert, and emergency summary page
- Medication & allergy lists to be kept current
- List of providers to be kept current by patient, including contact information
- Notification of immunocompromised status
- Checklist for to ensure you receive the attention you need if you are admitted to the hospital
- Temporary Power of Attorney
- One page template of the patient’s hospital, emergency and surgical medical history for the patient to complete and keep in the HEAT Kit™
- Authorization to release information to identified loved ones and primary provider (not to replace formal release of information, this is to utilize until formal release is completed)
- Hospitalization packing list
- Recommendations to improve your communication with your health care providers
- Two lined pages for you to add notes specific to your care and treatment needs
VASCULITIS SPECIFIC PAGES:
- Vasculitis Treatment Guidelines
- Treatments that work for you specifically
- Lab and radiological vasculitis specific tests
MG SPECIFIC PAGES:
- Myasthenia crisis
- Contraindicated medications
- MG Treatment Guidelines & resources
