With aHUS being a condition you have for life, it’s important to know who you can lean on, not only for medical management of your disease but for support, comfort, and encouragement. Learn which providers to go to and when, and which organizations and connections can help you feel less alone and more empowered to advocate for your health.
Who’s on Your aHUS Care Team?
Treating aHUS means seeing providers who know about the disease and how it works. Since aHUS is rare, you may need to search for a specialist who has specific training and experience.
Some health professionals who may be a part of your care include:
Kidney specialists (nephrologists). These doctors focus on kidney care. They can give you tests and monitor your kidney health. If possible, find a nephrologist who has experience with aHUS. This level of specialized care can make a difference in your care.
Hematologists. Theyspecialize in diseases in blood and also the parts of blood. These doctors help with your clotting issues.
General internists or primary care physicians. These doctors help keep tabs on your overall health and are in contact with your kidney doctors to be sure they’re up-to-date on your condition.
Intensive care physicians. They care for you if you have serious episodes that cause problems with your kidneys or other organs that require a hospital stay.
Nurses. These experts do hands-on care delivering medication and monitoring vitals. Nurses often spend more time with you than doctors do if you’re in the hospital, and can be an important source of comfort.
Nutritionists. Theycan help steer you toward kidney-friendly foods and maintain an overall healthy diet.
Social workers. These professionals can help coordinate care between your doctors and help with logistics such as transportation and financial aid resources.
Mental health counselors. They're helpful when you’re feeling anxious or depressed. They can help you build coping tools and process what you’re going through.
Support Groups
Having a rare disease like aHUS means there aren’t many people who understand your situation. Online connections in social media groups or forums can help you build relationships with others living with aHUS, even if they’re far away. You may be relieved to know someone else who gets the unique challenges of this disease.
Sometimes simply joining a group of people who deal with chronic or rare diseases can be a source of comfort, even if they don’t live with aHUS. Through these connections, you can share advice on advocacy and awareness about your condition.
NORD (the National Organization for Rare Disorders) has a toll-free number you can call: 800-999-6673. Members of the organization, advocates, and volunteers can help you find medical care, others with your disease, or other forms of support.
Advocacy Resources
To join forces with others living with aHUS and promote awareness and research, look to these sources:
Organizations focused on aHUS. This includes the aHUS Alliance and the Atypical HUS Foundation, which provide information to families affected by the disease and give support both for people with the disease and their caregivers. These organizations also keep records of the number of people living with aHUS in the U.S. and help raise funds for research.
Kidney organizations. The American Association of Kidney Patients, American Kidney Fund, and National Kidney Foundation are good resources for kidney disease information and advocacy.
Rare disease organizations. The NIH’s Genetic and Rare Diseases Information Center and the National Organization for Rare Disorders help raise awareness and research funds for diseases with very few cases.
Show Sources
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SOURCES:
NORD: “Atypical Hemolytic Uremic Syndrome,” “You Can Get Help With Rare Diseases.”
aHUS Alliance Action.
American Association of Kidney Patients.
American Kidney Fund.
National Kidney Foundation.
Genetic and Rare Diseases Information Center.
