Pompe disease is a multisystem disorder that affects about one in 40,000 people in the U.S. Because it’s rare, many physicians are unfamiliar with the disease and its treatment. If you or your child has Pompe disease, working with your primary doctor to develop and maintain a treatment plan can help ensure that you get the best care possible.
What is a treatment plan?
A treatment plan comprises a description of the disease and a list of common symptoms, underscoring those that you or your child has been experiencing. It also contains information about any medications and supplements, and their dosages and possible side effects. If you or your child is on a special diet, the treatment plan should include that information too. Finally, it should contain the contact information of your primary care physician, and other emergency contacts, such as your healthcare proxy and a relative.
Why is it important?
A multidisciplinary team of specialists, including cardiologists, neurologists, pulmonologists, respiratory therapists, metabolic specialists, dietitians, orthopedists, and occupational and speech therapists, help to treat Pompe disease patients. A treatment plan is, therefore, important to ensure that all these specialists are kept updated on your condition and treatment.
Although conditions such as shortness of breath and difficulty hearing are not classic Pompe disease symptoms, they could make it difficult for you to communicate when you’re experiencing a medical emergency. This underscores the importance of having a treatment plan readily available.
Who gets a copy?
If you provide emergency room personnel with a copy of your plan, they can contact your physician for any questions about treatment. Another copy should go to your healthcare proxy, a legally designated individual who can, if necessary, make medical decisions on your behalf. Make sure you discuss the plan with your medical proxy.
If you are employed, you should give a copy of the plan to your workplace representatives so that, in the event of an emergency, they can call your emergency contacts.
If your child has Pompe disease and is attending school, you should make the school nurse or clinic aware of the condition, and give them a copy of the treatment plan. School officials need to be prepared to treat your child if they need medical care while at school.
How should it be updated?
Review the treatment plan and update all necessary sections after each doctor’s visit. Did your doctor prescribe you or your child new medications? Does your doctor have new recommendations? Are you trying a new treatment? Has your doctor changed the dosages of any current medications? Include all this information in the treatment plan. After each update, make sure everyone has the most current information.
Last updated: July 21, 2020
Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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