How can I care for a relative or friend with ANCA-associated vasculitis?

Caring for a friend or family member with AAV isn’t always easy and you may face a number of challenges. Being aware of the possible issues you could face may help you plan so that you feel less shocked and better prepared if they occur.

What challenges are common before diagnosis and during early treatment?

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.

What challenges are common after initial diagnosis and treatment?

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.

Klaus – GPA & Heike (carer), Germany

Klaus – GPA & Heike (carer), Germany

Iva – EGPA & Birgitta (carer), Netherlands

What support is available for me?

The following tips may help you feel better able to cope with the emotional and practical demands of caring for someone:

  • Try to talk about your own feelings to avoid bottling things up – for example, with a partner, friends, an online support group, or the person you are caring for

  • Take breaks when you can so that you’re able to relax and do things you enjoy

  • Stay active and try to get some fresh air each day

  • Consider using relaxation techniques and try to get enough sleep so you do not become overtired

  • Find out whether your government offers financial support to carers or patients, and see if there are any laws in place to support you at work

Iva – EGPA & Birgitta (carer), Netherlands