A Caregiver’s Journey

Caring for someone with atypical-HUS can be scary and confusing, especially at the beginning. Understanding the disease, how it affects your loved one, and finding the right support may help to make things easier.

Because atypical-HUS is a genetic disease, caused by a change or mutation in a person’s DNA, he/she will always have atypical-HUS.1-4

Every person with atypical-HUS experiences the disease differently. Some may go long periods without symptoms until they had a second trigger, but others may feel sick frequently. Either way, many patients diagnosed with atypical-HUS experience severe or life-threatening symptoms, without any warning signs.1-4

It is critical that your loved one actively manages his/her disease and lifestyle, including an ongoing dialogue with his/her doctor about their symptoms and management options. Understanding atypical-HUS and recognizing its signs and symptoms are important steps in managing the effects of the disease.

Likewise, it is important to track family history of these types of genetic diseases to get the best understanding of your loved one’s atypical HUS.

There’s always more to learn when caring for someone with atypical-HUS,
but there are resources to help you along your journey.