It can be difficult to take care of someone with AAV when you are both unaware what is causing their symptoms. During appointments with their doctors, there may be a lot of information to take in, and you may both find the emotional impact of finding out about the disease a struggle to cope with. Looking after someone who is unwell while also taking care of other responsibilities, such as work, family commitments and relationships, may be hard and some periods may be trickier than others.

Some of the more challenging times may be triggered by specific events (such as your friend or relative’s reaction to the initial stages of treatment, or during any disease flares) so it may help to know that these phases will usually only be temporary and that things may become easier to cope with when these events are over or as the person you care for gets more used to them.

Over time, some of the initial challenges carry on, but others will usually resolve themselves or become easier to deal with. Other issues associated with caring for people with AAV after the early treatment stages include trying to find support for yourself, helping them cope with ups and downs such as relapses, and trying to manage the expectations of other family members and friends.