Patient Support

Patient Support

General

● Physical Health
● Mental Health
● Sexual Health
● Work

The management of vasculitis requires a collaborative approach between you and various medical specialists and allied health professionals. It is important for you as a patient to regularly attend your appointments, and to ask questions, should you have any.

The Process

1. People with vasculitis often report feeling unwell with symptoms of fevers, unexplained weight loss, and unresolved pain. Patients will next present to their General Practitioners or Family Physician with their symptoms. A full history will typically be performed, along with clinical tests such as blood tests, medical imaging, or rarely biopsies.

Vasculitis is often difficult to diagnose, due primarily to the fact that the signs and symptoms may mimic other, more common, diseases or infections. In some instances, patients often report on-going symptoms for an extended period of time.

It is important for patients that do have ongoing symptoms without resolution to return to their primary care provider to undergo further investigation.

2. In instances where resolution, or worsening of signs and symptoms, a referral to a specialist is often made. The specialist selected depends primarily on the symptoms. For example, in the case of patients with ongoing sinus involvement, an Ear Nose and Throat (ENT) specialist may be sought.

3. The specialist may order further investigational tests and medical procedures in order to definitively diagnose.

4. In rare instances, vasculitis may be diagnosed based upon patient history, clinical laboratory findings, physical examination, and by meeting prescribed disease criteria.

5. A treatment and management plan is typically created and may involve other medical specialists and/or allied health professionals.

6. Once treatment has commenced, ongoing blood tests and specialists appointments may be required.

Pain and Pain Management

Pain is a very complex experience and affects people differently. Some experience little, to no pain; whilst others experience debilitating and ongoing pain. Pain may be categorised as either:

• Acute: Pain that is of short duration and typically able to be controlled and managed using over-the-counter analgesics, such as paracetamol.
• Chronic: Pain that is severe and/or ongoing. Chronic pain can be associated with vasculitis, and may be a disease in its own right.

The management of chronic pain often requires working with your medical team in order to come up with a pain management plan.

For more information regarding pain and pain management, visit Pain Australia.

Mental Health

With any form of significant change in life experiences, such as being diagnosed with a form of vasculitis, it is to be expected that this may affect a person’s mental health.

There are many things an individual and/or family members can undertake to reflect ‘positive mental health’, including:

• Openly speaking with mental health professionals such as Psychologists, Counsellors, and even your primary care provider.
  In Australia, it is possible to be part of a Mental Health Care Plan, which allows individuals and/or their family members (up to 10 appointments per year) to meet with certain psychologists, occupational therapists and social workers. These appointments are Medicare rebated. A referral will be required from your primary doctor. For more information on this program visit Mental Health Care and Medicare or visit Beyond Blue

• Networking with others with vasculitis.
  Many people with vasculitis report feeling vulnerable and isolated. Given vasculitis is considered a rare disease, the number of people inflicted are not nearly as common as for example people diagnosed with cancer. As such, it is often times challenging to locate and socially interact with people with similar conditions.

  ANZVASC aims to hold meetings in various locations in both Australia and New Zealand with the aim of educating its patient and family members; as well as allowing networking opportunities with others with vasculitis.

  Additionally, there are social media forums such as Vasculitis Australia and New Zealand with regular posts and information from its members.

• Physical exercise
  Research demonstrates that even low intensity forms of physical exercise, such as walking, produces beneficial chemicals resulting in increased learning, creativity and productivity, improved social behaviour and social relationships, as well as improved physical health and possibly life expectancy.

• Meditation and Mental Health Positive Affirmation Applications
  There is increasing evidence to suggest that relaxation and meditation positively affects mood and social behaviours. There are a number of resources on-line with detailed instructions on meditation, as well as various applications including Calm, and Smiling Minds.

Work

A study conducted on Chronic Disease and Participation at Work found, after adjusting for age and sex, people with chronic disease were 60% more likely to not be able to participate in the labour force, and were less likely to be employed full-time, and more likely to be unemployed, than those without chronic disease. 

There are various reasons as to why so many people with chronic disease may not be able to participate in work, including:

• Inability to physically undertake a particular role.
• Mental health issues
• Treatment side-effects
• Licensing and insurance
• Employer discrimination

It is important to note, in the first instance, to cooperate with your employer. In most instances, your employer is obligated to make reasonable adjustments to the way you perform work in order to accommodate your diagnosis and symptoms. Additionally, disability discrimination law prevents employers from dismissing, demoting, or any other less favourable treatment to an employee because of a disability or chronic illness.

More information on what you can do as an employee and what your employer should do can be found at: https://www.smartcompany.com.au/people-human-resources/employee-chronic-illness/

For those that are unable to work, and who are deemed permanently disabled, may be able to access the National Disability Insurance Scheme (NDIS). For more information on the NDIS visit: https://www.ndis.gov.au/