Tips for Taking Care of aHUS Caregivers

Tips for Taking Care of aHUS Caregivers

Rare diseases such as atypical hemolytic uremic syndrome (aHUS) can be difficult to cope with, both for patients and their caregivers. Caregiving is a very demanding and daily task.

Here are some tips for family members and friends to help support caregivers, especially those who may be expressing feelings or showing signs of being exhausted or overwhelmed.

Learn about aHUS beforehand

Caregiving is stressful, and caregivers may not be always in a position to explain aspects of the disease. They also may be uncomfortable talking about particular symptoms, like nausea. Therefore, it can help if you are informed about the disease. Knowing basics about the nature of aHUS and its likely symptoms can help to ease conversations.

A good starting point is our website, where you can find articles about research, potential new treatments, clinical trials, and more. Links provided here to external sites may also be of help.

Stay in touch

Worsening symptoms can put caregivers under a lot of stress and leave them feeling lost. A little reassurance on your part can go a long way in assuaging their concerns. If possible, spend some quality time together and keep the conversation going.

Lend a helping hand

Caregivers — whether family members or professionals — may feel reluctant to ask for help. Lending a helping hand, even if one’s not explicitly requested, can make their lives a bit easier and be reassuring. Offer help with running errands, getting things ready for an upcoming doctor’s appointment, or any other act that might boost about a sense of optimism.

Keep an eye open for signs of depression

Constantly tending to a person with a chronic disease can take a toll on both the physical and mental health of a caregiver. Watch for signs of depression before they turn into something more severe.

Be understanding

Given the constant attention needed by patients and each day’s hectic schedule, caregivers may not have time to engage personally with family and friends. Sometimes, they may reject invitations, give responses that are hard to understand, or need to change plans at the last minute for reasons beyond their control. It is important to empathize, and be understanding in such situations.

 

Last updated: Sept. 29, 2019

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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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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.