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The underlying cause of atypical-HUS and its potential risks remain with you throughout your life. But the good news is that atypical-HUS can be managed.
You didn't choose atypical-HUS, but you can choose to deal with it proactively by educating
working closely with your healthcare team on a management plan, and taking advantage of the
that's available to you. You are your own best advocate.
One way you can take control is through Alexion's OneSource™ program, a personalized patient support program for those diagnosed with atypical-HUS and their caregivers and loved ones. The OneSource team can help you navigate insurance coverage issues, direct you to educational programs and community connections, and more.
The demands of living with atypical-HUS may make it necessary for you to reassess where you devote your time and energy. Trying to maintain the same pace you were used to before your symptoms started can leave you feeling drained or resentful. Take stock of work, family, and other responsibilities and be as realistic as you can about what you're able to do, what you need help with, and what can wait until later.
Life with atypical-HUS can be unpredictable. You may need to cancel plans, carve out extra time to rest, or ask for help in meeting your responsibilities. Feeling guilty is understandable but, with practice, you may find that honest sharing about your condition and your need to take care of yourself can help you to feel more supported and understood.
Your physical symptoms can sometimes feel all-consuming, but paying attention to your
emotional well-being can be an important part of adjusting to life with atypical-HUS.
Throughout your life, prioritizing your mental health may mean different things at different times. Reaching out to a professional for support, getting enough sleep, eating healthy, pursuing activities you're passionate about, and having fun with people you love are all ways to tend to your emotional and psychological well-being.
If you are a caregiver, your focus may be on the person with the diagnosis. But don't
forget that your
own health and well-being matter, too.
Alexion's OneSource program provides a range of support services that can help you balance the demands of caring for someone else while also taking care of yourself. There's a Patient Education Manager (PEM) in your area who's available to talk and connect you with resources that can help.
RhondaPatient Education Manager/South Central
MikePatient Education Manager/North Central
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