Making the Most of Your Doctor’s Visit When You Have aHUS

Vaidyanathan Subramaniam avatar

by Vaidyanathan Subramaniam |

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Atypical hemolytic uremic syndrome (aHUS) is a rare disease that causes abnormal blood clots to form in small blood vessels in the kidneys, blocking regular blood flow and making the kidneys unable to get rid of waste. The disease produces symptoms of anemia (extreme tiredness) and fluid buildup as a result of dysfunctional kidneys.

Because aHUS is a very rare disease, few doctors have experience with treating multiple aHUS cases. If you have aHUS, the following tips can help you have a productive discussion with your doctor during your next appointment.

Identify the right doctor for your needs

aHUS is very rare, affecting one in 500,000 people in the U.S. so not all doctors are well-trained about the disease’s symptoms and treatments. Finding the right doctor may seem difficult but your local clinic might be able to offer some guidance. You can also check out organizations such as the aHUS Alliance, American Kidney Fund, aHUS Foundation, and aHUS Canada for more information.

Define your goals beforehand

Being well-prepared for your appointment will make the discussion with your doctor more productive. Make a note of the symptoms that you’ve been experiencing, any changes to your diet, and any medications that have been ineffective. Also, write down any questions for your doctor.

Securing an appointment with a specialist can be difficult, so make sure you plan to arrive at least 15 to 20 minutes prior to the scheduled time. This will help you not to feel rushed so that you can be more relaxed during the appointment.

Take your medical record with you

While your doctor or clinic most likely maintains an electronic copy of your medical records, it is always helpful to have a hard copy of your own. Your medical record contains information about your ongoing therapy, the results of diagnostic tests, dietary considerations, and more. Having an up-to-date record may be helpful if you move to a new place and/or change doctors.

Be expressive yet concise

Symptoms of aHUS, such as fatigue, nausea, and anemia, often overlap with those of several other diseases, which can make it difficult to find the right diagnosis. Therefore, communicate clearly about the symptoms that you’ve been experiencing to the doctor. At the same time, understand that needlessly-long conversations can often turn out to be counterproductive.

Try not to be inhibited

Patients hold back from asking certain questions or discussing specific symptoms for a variety of reasons but such inhibitions may prove to be counterproductive. If you have questions about a diagnostic test or result, ask your doctor. The answers may seem obvious, but it is important to hear them directly from your doctor.

A healthy, uninhibited interaction between you and your doctor will have a positive impact on treatment outcomes.

Record what happens at your appointment

Patients can forget some of the important points discussed with their doctors. Thus, with your doctor’s consent, record the conversation on your smartphone or tablet for future reference. Tell your doctor how such recordings might be helpful to you.

Get a personalized treatment plan

Treatment and symptom management of aHUS is an ongoing process. A treatment plan includes information about the disease, symptoms, prescribed medications and their side effects, the duration of therapy, and the costs involved at every stage. Ask your doctor to prepare a treatment plan that is personalized for your case, and be sure to take it with you to every doctor’s appointment.


Last updated: Sept. 24, 2019


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.