Tips for Maintaining a Personal Health Record When You Have aHUS

Vaidyanathan Subramaniam avatar

by Vaidyanathan Subramaniam |

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multidisciplinary approach

Atypical hemolytic uremic syndrome (aHUS) is a rare genetic disease that results in the formation of blood clots in the small blood vessels of the kidneys. The disease can lead to life-threatening complications such as hemolytic anemia (destruction of red blood cells), thrombocytopenia (low platelet count), and kidney failure.

Symptoms of aHUS are subtle, making it difficult for clinicians to diagnose the disease. A well-maintained personal health record (PHR) helps provide easily accessible treatment information and serves as an indispensable tool in aHUS diagnosis and treatment.

Why do I need a PHR?

Diseases such as aHUS have no cure and rely on symptomatic treatment that involves dealing with doctors from multiple specialties such as nephrology, cardiology, and hematology.

Regular diagnostic tests such as blood tests need to be tracked in order to make sense of symptom progress. A PHR can help in consolidating all this information in an accessible manner, so even if you switch doctors or are traveling, your medical information is with you.

PHRs also help first responders to access vital information in the event of an emergency.

What kind of PHR is available?

Two kinds of PHRs are generally used: standard (standalone) and tethered (patient portal). You can choose either of them or both if you desire.

A standalone PHR can be a collection of physical documents in a folder or it can be stored electronically through a service that’s accessed on your mobile device. Opt for a standard PHR if you are willing to maintain your own copy and are diligent enough to keep it updated after every doctor’s visit. The advantage of having a standalone PHR is that you are in control of the information and can customize it to your specific needs. Moreover, a standalone PHR is available to you independent of your healthcare provider.

A tethered PHR or patient portal is usually maintained by your healthcare provider, who provides you and your doctor access to your medical history, treatments, and diagnostic results. Patient portals are generally more secure and are updated automatically at every doctor’s visit. Some portals may also offer additional analytic tools to help make better sense of your medical history.

However, access to tethered PHRs depends on your healthcare provider and you may not have access to it at all times and from all locations. Check with your healthcare provider if there are any limitations to using their PHR system. If you do opt for one, do note that a tethered PHR connected to a patient’s legal medical record is protected under the Health Insurance Portability and Accountability Act Privacy Rule.

What information should be included in a PHR?

Regardless of the type of PHR you use, make sure it contains the following information:

  • your name and contact details in case of emergencies.
  • your current health insurance and contact details of the agent or insurance provider.
  • detailed information about your symptoms and their severity.
  • a calendar indicating upcoming doctor visits.
  • details about diagnostic tests.
  • a list of environmental factors such as bacterial or viral diseases, medications, and other triggers that may be linked to aHUS.
  • any known family history of aHUS.
  • information about prescribed medications, such as Soliris, and the dosing, frequency, and any side effects you have experienced.
  • information about symptomatic treatments such as plasma exchange, liver transplant, and dialysis.
  • any other information you think would be relevant.

If you are unsure about creating your own PHR, the aHUS Foundation has a template that can help you get started.

Are PHRs expensive to maintain?

Most standalone PHRs are free or inexpensive to maintain. However, if you are using an electronic service, you may be charged a one-time or annual access fee. For most patient portals, the healthcare provider may cover the cost of maintaining your PHR. Check with your healthcare provider if additional costs are charged to access certain features of the PHR.


Last updated: Nov. 26, 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.