Finding out that you have a rare disease like atypical hemolytic uremic syndrome (aHUS) can be confusing and frightening, especially if your doctor has only treated a few people with this disorder before.
Here are a few tips to help anyone who is new to an aHUS diagnosis.
Make sure you understand your diagnosis, and if necessary, get a second opinion. Some patients may benefit from a genetic test. If aHUS runs in your family, you may want to talk to a genetic counselor about this test, and to find out if other family members might need to get tested.
Develop a treatment plan
Work with your healthcare team to develop a treatment plan. This is a detailed description of your disease and symptoms for your records. A treatment plan also should include your treatment options, their goals, potential side effects, and a plan for the future.
You should review the treatment plan every time you meet with your physician, and update it with any new information after every appointment.
Plan for emergencies
aHUS can cause severe attacks that affect kidney function. Not all emergency room staff will be familiar with aHUS, so it’s a good idea to keep your treatment plan at hand for emergencies.
The aHUS Foundation also has a printable letter that gives important information to ER personnel who may not be familiar with aHUS. It’s recommended that you complete this letter with your information and your physician’s information, and keep it with you at all times.
Connect with others
It’s easy to feel isolated when you have a rare disease, and connecting with others becomes even more important. The aHUS News website is one of the places you can learn about ongoing research and treatment options. RareConnect is a social networking platform that has a community dedicated to aHUS.
The following organizations also offer information about treatments and research underway in aHUS:
- The aHUS Foundation
- aHUS Alliance
- American Association of Kidney Patients
- American Kidney Fund
- National Kidney Foundation
Last updated: June 1, 2020
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.
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