Living with Vasculitis //
Both the physical as well as psychological effects of initially being diagnosed with a chronic medical condition and the ongoing implications can be substantial for both the patient as well as their caregivers, family and friends.
There are a number of people and groups available to communicate and obtain support. These include:
Health Professionals: Medical doctors are educated on effective communication with their patients. Often a lack of understanding of the disease results in anxiety. Medical practioners are able to detail the medical conditions to reduce this anxiety. In addition, it is important for patients to develop a good relationship with their doctors and inform them of any medical concerns so that they may be addressed. In addition, doctors have contacts with psychologists or counselors for patients and their family or caregivers to address psychological/emotional topics.
Social Groups: As awareness of chronic diseases such as vasculitis is raised, more and more social groups may be formed in various towns and cities around Australia. If you are aware of social groups in your town/city please let us know so that we can list these on the website for people to see.
Online social groups are available such as the Facebook webpage Wegener's Granulomatosis (GPA) and Vasculits Group Australia/NZ.
Personal Stories: Often, people feel isolated when diagnosed and treated with a chronic medical condition. Reading or listening to others that have endured similar circumstances provides some comfort in the fact that you are not alone. Click on Personal Stories to read about real life journey's of people in Australia.
Do you need more information?
If you have a general question relating to vasculitis (not patient specific), simply click on the Information Request button and we will review your questions. Please note that we may not be able to respond to every question, however if there are similar related questions we will provide a FAQ on this page. Examples of question topics may include:
In addition, there may be instances where we require your support for research purposes. Please keep a lookout on this page for Calls for Participants.