Vasculitis UK: the efforts to improve quality of life for the vasculitis community and its hopes for the future
Zoi Anastasa first became a member of Vasculitis UK—a registered charity run by patients for patients—when she was diagnosed with granulomatosis with polyangiitis (GPA) vasculitis in 2014. Today, Zoi is the deputy manager of operations, and represents Vasculitis UK in Eurordis as an ePag (European Patient Advocacy Group) in the ERN RITA (European Reference Network for Rare Primary Immunodeficiency, AuToinflammatory and Autoimmune Diseases)
Vasculitis UK: multi-channel, 24-hour support for all and a strong research focus
“We support patients with vasculitis and their families as much as we can and in many ways.”
Vasculitis UK (VUK) offers 24-hour support to the vasculitis community through various platforms and means of communication. Zoi is part of the admin team who monitor the VUK Facebook page which has been running for the last 13 years and offers a welcoming environment for peer-to-peer support. Zoi is also admin for VUK’s internet discussion group, Health Unlocked—the world’s largest social network for health—where patients and family members can ask questions, engage in discussions and find connections in the community. “We also have a free telephone helpline, which receives many calls from the vasculitis community—some who have been living with the disease for a long time, some who are just diagnosed and others who are still on the journey to diagnosis.”
More recently, VUK has introduced a new, younger generation of trustees to influence the direction of the organisation. “It is great to have new perspectives, and it is lovely to see that these younger individuals who have been affected are wanting to support others,” Zoi says. Having recognised that the younger community often have different concerns compared to those who are older, one of the younger trustees of VUK established a new vasculitis Facebook group for individuals under 40. Zoi explains that the “new group means people can discuss problems that are more relevant to their age, such as balancing their health needs with their work life, fertility issues, or how hard it is to be young and to have to change your whole life.”
“With a volunteer-led team we can prioritise funding research. We fund around three research projects each year and support many more.”
In 2021, VUK announced the funding of a one-year COVID-19 research study led by Professor Lucy Fairclough, Associate Professor of Immunology at Nottingham University. The primary purpose of the study is to answer the question: do people with vasculitis mount an effective response to the COVID-19 vaccination and how long does it last?
Future hopes: healthcare professionals learning and collaborating
“Following on from the Vasculitis Patient Conference (2–3 April 2022), there really is a great opportunity to progress forwards through collaborative efforts. When it comes to science, things can change very quickly, and so I believe now is the time for vasculitis to be in the spotlight, and for great change to come for the community.”
One change that Zoi would very much like to see is the dispelling of the misconception around “limited vasculitis”. “This idea persists in the community but ‘limited vasculitis’ does not exist. Vasculitis is a disease that can progress over time and significantly affect different parts of the body, and if you don’t have the right treatment from the offset, the damage can progress.
“There needs to be clear guidelines for GPs to know how and when to make referrals. We can’t expect GPs to have knowledge of every rare disease, so that’s why it is important patients are referred to rheumatologists, nephrologists, neurologists, ophthalmologists, or ear, nose and throat (ENT) surgeons that have a special interest in vasculitis.”
As well as her hopes around improved pathways for referrals, Zoi is keen to see collaboration between clinicians accelerating. “I think clinicians working together with other clinicians should be actively encouraged—pride must not get in the way. Everything should be done in the interest of the patients.”
Zoi was pleased to see such strong engagement from the community at the conference, who took the opportunity to ask clinicians many questions. She noted, however, that some talks required the audience to have scientific knowledge to really benefit from their content, and she hopes that future events will see an improvement in this respect. But one of Zoi’s highlights was seeing the vasculitis specialists acknowledging the importance of the patient community in ongoing and future research: “It was so nice to see these specialists appreciate the patient community for their role in informing and driving research. It is clear they want to include patients and to listen to the patient’s voice. One of the clinician’s presentation slides said ‘Keep calm and listen to the patient’. That, I think, is a really good message and an important outcome of the conference as a whole.”
VUK resources
The VUK website provides educational content, advice on treatment and management, regular vasculitis news updates, information on upcoming events and fundraising, and much more. Visit the VUK website: www.vasculitis.org.uk
VUK telephone helpline: 0300 365 0075
To learn more about the funding and strategy of the COVID-19 research study, visit: vasculitis.org.uk/news/vasculitis-uk-funds-covid-related-research
For a full list of research either funded or supported by VUK, visit:
- funded research: vasculitis.org.uk/research/funded-research
- supported research: vasculitis.org.uk/research/supported-research
UK-NA-2200081 / date of preparation : May 2022
