What’s a Treatment Plan and Do I Need One With aHUS?

Living with a rare disease like atypical hemolytic uremic syndrome (aHUS) can be challenging.

Given how rare aHUS is, many doctors (especially those in emergency rooms) may not be aware of the disease or the best treatments for it. Completing a treatment plan with the help of your primary care physician and keeping it up to date can help ensure that you get the best care possible.

What is a treatment plan?

A treatment plan generally includes a description of your disease and a list of common symptoms, highlighting the symptoms that you currently experience.

It also contains information on the treatments you are receiving. This is largely the treatment approach you agreed to in discussions with your doctor. It should include all of your medications and any supplements you are taking, noting the dosage and potential side effects. If you are on a special diet, you should include information about the diet in your treatment plan.

Your treatment plan should also include contact information for your primary care physician in case of an emergency. Other emergency contacts, such as your health care proxy, should also be part of your treatment plan.

As aHUS progresses, patients commonly experience attacks. These are periods of heightened symptoms that can constitute a medical emergency. You may want to have a “quick guide” to an aHUS attack in your treatment plan. Include here information about medications or treatments recommended for you by your doctor in the event of such an attack.

Who should have a copy?

You can give your treatment plan to emergency room personnel, and they can contact your physician for any questions about your treatment.

If you are in school, you should make the school nurse or clinic aware of your condition, and have a copy of your treatment plan as part of your file. School officials need to be prepared to treat you if you need medical care while at school.

If you are working, you should give a copy to workplace representatives so that, in the event of an emergency, they can call your emergency contacts.

Another copy should go to your health care proxy. This is a legally designated person who can make medical decisions for you in the event that you are unable to make those decisions yourself. Discuss with your medical proxy your wishes in such cases, so they know how to help lead your medical care on your behalf. Are there treatments that you do not wish to receive, or life-saving measures that you object to? Make sure that you discuss these with your medical proxy before an emergency arises.

How frequently should I update it?

Review your treatment plan and update all necessary sections after every visit with your physician. Do you have new medications? Does your doctor have new recommendations? Are you trying a new treatment? Have doses of current medications changed? Include all this information in your treatment plan.

After each update, touch base with everyone who has a copy of your treatment plan, especially your medical proxy, so that they have the most current information at hand.

Last updated: June 8, 2020

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aHUS 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.