More Awareness material to share

In Uncategorised by John Geddes

Here is our second set of Awareness posts. Please share wherever you feel appropriate.

8.         Vasculitis UK is a registered charity, we always welcome more support.

Vasculitis UK depends entirely on voluntary donations and fundraising to raise the income needed to continue our work. Vasculitis UK provides support, advice and information to those living with vasculitis. VUK sponsors research into the causes and treatment of vasculitis and works to raise awareness of ALL types of vasculitis. VUK is led by people who have a personal or professional experience of vasculitis.

9.         Early diagnosis and treatment improves outcomes. Vasculitis can be life‑threatening if not treated

There are a number of vasculitic diseases and each can involve any number of organs in the body. In addition many of the symptoms the patient presents with are similar to many other illnesses or conditions. Vasculitis can mimic other diseases. As the treatment for vasculitis is by prescribing drugs with high toxicity there are many diagnostic tests to be undertaken to rule out other diseases and to confirm the presence of vasculitis.

10         The causes of vasculitis are often unknown. Vasculitis is usually an autoimmune condition

The vasculitides are diseases involving the immune system whereby the immune system no longer provides defence against infection or other triggers and, therefore, the immune system fights itself.

11. Vasculitis UK publishes a regular newsletter – sign up today

This high quality interesting and informative newsletter is published twice yearly in the Spring and Autumn. There are medical and scientific articles, written in plain English, blended with personal stories, reports of events, diary of forthcoming events, activities of fundraisers and so much more. We're always updating our news feed on here so please check back often. You may also keep up to date with our ongoings on Facebook or Health Unlocked.

12. The immune system mistakenly attacks blood vessels

The immune system is a major part of the body involved in protecting us from infections. Unlike other organs where the cells and tissues stay in one place (the heart or the kidneys) the cells of the immune system move around the body either to monitor for signs of infection or to fight infection or destroy cancer cells. The immune system contains many very specialised systems to prevent cells that recognise our own bodies from becoming activated but sometimes these systems may not work properly and this can lead to autoimmune disease.

13. Vasculitis is considered a rare disease

You may be the only vasculitis patient on your GP list. Where possible you should arrange to see the same doctor at each visit to ensure continuity of treatment and advice given.

14. Vasculitis can affect children and adults

In the last 10 years we have: Refined classification: The 2012 Chapel Hill Consensus update and subsequent pediatric-focused work have been increasingly applied in children, improving separation of IgA vasculitis (IgAV), Kawasaki disease (KD), Takayasu arteritis (TAK), childhood PAN, and ANCA‑associated vasculitis (AAV). Monogenic vasculitides: Over the last decade, entities such as DADA2 (ADA2 deficiency), SAVI, COPA syndrome and others have been recognized as distinct, genetically defined vasculitis/vasculopathy syndromes. This has changed the work‑up of “atypical PAN‑like” or early‑onset vasculitis and stroke in children, with earlier genetic testing now standard in specialist centers. Pediatric‑specific guidance: EULAR/PRINTO/PRES pediatric vasculitis recommendations (for IgAV, KD, TAK, PAN, AAV) and, more recently, national guidelines such as the UK IgAV document Formal pediatric trials of biologics and targeted agents (rituximab, tocilizumab, JAK inhibitors, complement inhibitors) rather than extrapolation from adults. Formal pediatric trials of biologics and targeted agents (rituximab, tocilizumab, JAK inhibitors, complement inhibitors) rather than extrapolation from adults.