Traveling with Atypical Hemolytic Uremic Syndrome: Tips for Patients

According to a story from, traveling with atypical hemolytic uremic syndrome (aHUS) takes some extra preparation and planning ahead. This syndrome can affect multiple organ systems and especially the kidneys, so it’s worth the effort to make sure that you have everything that you need. In this story, we will present some basic tips that can help patients travel with safety and security.

About Atypical Hemolytic Uremic Syndrome (aHUS)

Atypical hemolytic uremic syndrome is a very rare, progressive, and potentially life threatening illness which is most characterized by the formation of blood clots in many small blood vessels within the body. In at least some cases, atypical hemolytic uremic syndrome is the result of mutations affecting proteins that regulate the complement system, a component of the immune system. The uncontrolled activity of this system is what allows for the disease symptoms to appear, which can include fatigue, swelling, diarrhea, vomiting, abdominal pain, confusion, seizure, coma, kidney failure, heart attack, and stroke. This disease may appear alongside other illnesses as well. Treatment for this disease may include kidney transplant, plasma exchange/infusion, the drug eculizumab, and dialysis. More effective treatments are greatly needed for this illness, as patients have poor outcomes and overall quality of life. To learn more about atypical hemolytic uremic syndrome, click here.

  1. Prepare your medications. Make sure that you are taking all of the medicines that you will need for your trip and that you have enough supply to last you for the duration.
  2. If you are going for a longer trip, it might be a good idea to get your blood cell and platelet counts checked. In addition, get a blood test to check your kidney function.
  3. If you have mobility limitations due to shortness of breath or fatigue, check in with your airline and travel agency to ensure that you will be able to get where you need to be on time.
  4. If you need dialysis, make sure that you are traveling to an area with an available treatment center. You should try to plan this out at least two months ahead of time to reserve a time slot.
  5. If you are on a waiting list for a kidney transplant, you should inform your transplant coordinator and discuss if you would like to remain active on the list while you are away.

For more detailed info, click here.

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