The aHUS Foundation has Created a Medical Tracker for atypical Hemolytic Uremic Syndrome Patients

aHUS Tracking

Atypical hemolytic uremic syndrome (aHUS) is a rare disease that causes blood clots to form within the small blood vessels in the kidneys. These clots lead to organ damage which brings a whole host of health problems. Patients must have regular blood tests in order to ensure their kidneys are functioning properly. Additionally, the platelet counts and red blood cell counts must be evaluated.

The results from these checkups should be recorded so that trends over time can be evaluated.

The Complete Blood Count includes-

  • Red blood cells
  • Platelets
  • White blood cells
  • Hematrocrit
  • Hemoglobin

The tests also account for proteins and other blood components like-

  • Albumin
  • Haptoglobins
  • Blood urea nitrogen
  • Creatine
  • Lactate dehydrogenase

Lactate dehydrogenase is a chemical marker that helps us understand disease activity.

Why it’s Important

Each aHUS patient has a unique disease complexity, variability, and severity. These make monitoring that much more important and that much more complicated. Symptoms can change periodically and trends are essential to follow. By keeping a log of all lab values, we can try to understand these trends.

These lab tests are so essential because they can help to detect the activity of the disease before symptoms arise, allowing patients to get needed treatment as soon as possible. Ultimately, this can help to protect the patients overall kidney health.

Additionally, through monitoring, we can understand which specific therapies are best for patients.

aHUS Tracker

The aHUS Foundation has created a chart that allows for easy tracking for patients. They call it the aHUS Tracker. This chart has a place to document all labs and test results. Patients can input the date of each test, panel, study, and blood count, as well as the results for each.

Additionally, the tracker has a space that patients can use to write down each medication they take, in what dose, at what time. They can also input their allergies and other medical diagnoses or issues.

Further, the tracker includes a space for personal data and medical contact information including-

  • Emergency contacts
  • Primary physician
  • Specialists
  • Hospital addresses
  • Patient blood pressure
  • Patient height
  • Patient weight

Lastly, the tracker includes educational resources for patients.

You can read more about this resource and the importance of tracking here.

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