Being sick, even with a cold or a simple virus, is tough for most children and adult mito patients. Many people with mitochondrial disease are “wiped out” when ill, and can take much longer to recover. It is important to have a plan in advance about what to do when and if you, your family member, or your child gets sick. Below are sample plans that you can share with your physician and customize specifically for the mito patient, in the event of an illness or emergency.
Please note that these letters are only samples. It is essential for your protocol letter be adapted specifically for your needs and printed on a letterhead with your physician’s name, signature, contact number, and date. Also, please remember to update your letter annually, even if the treatment is the same. A protocol letter that is over a year old may not be considered “active” and therefore not followed by ER physicians.
*For a more detailed understanding of protocol letters and their importance please see Dr. Korson’s presentation.