Creating a Treatment Plan for Fabry Disease

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by Mary Chapman |

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Because Fabry disease affects multiple organs, patients are well advised to keep a comprehensive and personal treatment plan. Here’s what you should know about such a plan, including how to work with your primary physician to create one.

What is a treatment plan?

A treatment plan is a clear, customized, detailed strategy that aims to help you and others keep track of your medications and their effects, and to help you overcome challenges and reach specific goals. As a tool, it can help to keep you engaged with your treatment.

A treatment plan also helps medical specialists, such as those addressing common Fabry symptoms like respiratory abnormalities or eye problems, to understand your treatments and make proper adjustments as necessary.

What’s in it?

A treatment plan includes a description of your disease and a list of common symptoms, underscoring those that you’ve been experiencing. It also has detailed information about the medications and supplements you take, including their dosage, times of use, and possible side effects. If you are on a special diet, include that information too.

In addition to measurable goals and diagnostic test results, your treatment plan should also contain contact information for your primary care physician and for other emergency contacts, such as your healthcare proxy and a relative.

How to create one

While its formats and other elements may vary slightly, every treatment plan has the same basic information. You and your doctor will work together to develop and maintain it. If you don’t feel well enough to do this on your own, ask someone to help you.

Creating a treatment plan can also help you and your physician review your current treatments, and any side effects. You may  want to ask your family or caregiver for their impressions as to how your medications appear to affect you before holding this discussion with your doctor.

If a medication no longer seems to work as well as it used to, let your physician know. There may be treatment options.

Discuss with your physician what measurable, specific, near- and long-term goals you should include in your treatment plan. If you think the goals suggested are too ambitious or too easy, say so. You want to focus on goals that are both realistic and helpful in these plans.

Make sure to review your treatment plan regularly, and discuss it with your healthcare proxy.

Be sure to include personal information, such as your name, address, and current information for an emergency contact in your treatment plan. Your family or caregiver, proxy, and possibly others who might need this information should have it or have access to it.


Last updated: Aug. 7, 2020


Fabry 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.