Vasculitis UK Trustees, Medical Advisors and Volunteers

Here the Trustees introduce themselves, with a little about themselves, what they presently do for V-UK, and their hopes for the future. As you will see, Vasculitis UK is proud to say that the charity is run by vasculitis patients for vasculitis patients.

Vasculitis UK Trustees

Dorothy Ireland – Chair and Fundraising Coordinator

I’m Dorothy Ireland, chair of Vasculitis UK and also the Fundraising Coordinator. I successfully took us through the process of changing to a CIO ( Charity Incorporated Organisation ). There is still a lot of work to do with changing documents and information from the UK Vasculitis Trust to Vasculitis UK.

I was diagnosed with MPA in 2008 with renal failure. It has also affected my heart, and as if that wasn’t enough I have osteoarthritis and spinal problems.

I was born in London but I’m now in Derby. I’ve had various jobs including a court officer and a primary school teacher. I had a brief period with Department for Work & Pensions and was ill health retired from there 6 years ago.

I’ve also done a lot of voluntary work. I’ve been a school governor and was Chair of Governors for 10 years. I helped to establish and was secretary to a friends group for my local park and successfully applied for lottery funding, Awards for All and Breathing Places. I also helped to organise our local Fair and I ran the local dog show.

When I went to my first Vasculitis AGM it was still the Stuart Strange Trust and I met John and Susan Mills. I wanted to set up a local support group because like so many others I’d never met anyone else with Vasculitis. With their help, the East Midlands Vasculitis Support Group was born. I was then recruited as the Fundraising Coordinator for Vasculitis UK and a became a trustee.

You can contact me here: Dorothy Ireland

Vice Chair – Susan Mills

My name is Susan Mills.

My first introduction to Vasculitis UK, then known as The Stuart Strange Vasculitis Trust (SSVT), was back in 2001 when my late husband, John Mills was first diagnosed with Granulomatosis with Polyangitis (WG). I found the advice and support I received back then, invaluable.

In 2009, when John was nominated chairman of the Stuart Strange Vasculitis Trust, I found myself thrown into a world of many different types of vasculitis and little did I know then, how much our life would change.

For the last 21 years, I have supported John firstly as chair of the SSVT and then with the transformation and development of Vasculitis UK as it is known today. John and I were used to living and working together, so being thrown together working for the charity, almost full time, was not a difficult choice for us both to make.

I am from a background of dentistry, working with my husband John for many years, starting as a dental nurse at the age of 17. I later qualified as an NVQ Assessor/Tutor for dental nurses and also qualified in Dental Practice Management.

Later, I went on to qualify as a Social Worker with the Open University and have worked with the elderly, disabled and vulnerable young people.

I am now involved with the East Midlands Vasculitis Support Group, the Vasculitis UK Facebook, HealthUnlocked and Twitter support and discussion groups. I support both Dorothy and Zoi with running the VUK helpline and Dorothy and Charlotte with fundraising.

Charlie Harper – Young Adult Support Co-ordinator 

I’m Charlie and I was diagnosed with granulomatosis with polyangiitis (GPA) in 2019 at the age of 27. As well as the common ear, nose, and lung involvement from GPA, I also developed a subglottic stenosis (narrowing of my airway below my voice box) and inflammation of my pituitary gland. For 18 months I lived with a tracheostomy and only recently had this removed after a full tracheal reconstruction. I live in Oxford with my wife Jen (also a trustee) and daughter Heidi. Currently I work as a Statistician at the University of Oxford and am studying part-time for a PhD in population health. Outside of work, I enjoy days out with my wife and daughter, playing the ukulele, swimming (well trying to at least), and reading plenty of fiction during periods of downtime.

After my diagnosis, I was initially wanting to distance myself from anything related to vasculitis. Only recently have I stated reaching out to others and found the benefits to be extraordinary! I am delighted to have been appointed as a trustee for Vasculitis UK and excited to contribute my skills and experience to the charity. As a trustee, I’m keen to establish a supportive community for young adults with vasculitis.

Charlotte Smith – Fundraising Co-ordinator

Hi, I’m Charlotte and I was diagnosed with GPA in my early teens in 2009. I never let it hold me back and try to live life to the fullest.

I currently work for Ronald McDonald House Charities who support families with children in hospital and have been formally involved in fundraising for 5 years. It’s a real passion of mine and I’m excited to see how I can support Vascuilitis UK so that we can fund research and support to better outcomes for those with the condition. If you’ve got a fundraising idea, I want to hear about it! 

In my spare time, I’m a volunteer dog walker and I play on my local touch rugby team. 

Jen Harper – Vasculitis Patient, Information and Education Coordinator 

I’m Jen and I’m the wife and advocate of vasculitis patient and fellow trustee, Charlie. My professional background is in education and science communication and, as a trustee, I’d like to support patients and their families to understand their health and to access accurate and reliable information. I currently manage my role as a trustee alongside raising my young daughter and working in communications for a local craft shop. When I’m not running around after a rambunctious toddler, you can find me behind my sewing machine or working my way through endless crochet projects.

Although I don’t have vasculitis myself, I feel my insight into the world of chronic illness as a wife and advocate will enable me to offer support to families and friends of those on their vasculitis journeys.

Jane Edwards

Jane was diagnosed with Microscopic Polyangiitis in 2012, involving her nose, kidneys, and fluid buildup around her heart. The diagnosis was later changed to EGPA/Wegeners when she transferred her care to Addenbrookes. At the same time, a scan found inflammation in her aortic arch affecting the blood flow to the body. Over the years, she has tried many treatments but has struggled to find a lasting remission. 

Professionally, Jane holds a BSc in Chemistry and a Master in Business Administration (MBA) from Durham University. She has over 20 years of experience in the medical device industry; these roles included detailed medical knowledge and working with the NHS. Her current position at BSI oversees the EU and UK Medical Device Notified Body’s internal and external communications. 

Jane lives in Lincolnshire with her husband, two teenage daughters and two excitable dogs. In 2019, Jane published a book about her journey with vasculitis and how to maintain a positive life. She has received overwhelming feedback and believes providing information to people can significantly impact their lives. She feels communication is one of the critical strengths of Vasculitis UK, sharing information and supporting those who feel vulnerable. 

Peter Rutherford

Peter Rutherford is a Geordie in exile in North Wales but still supporting a losing football team of course – as well as the Wrexham movie stars. He is a nephrologist who had a 25 year career in the NHS including as a consultant nephrologist and hospital Medical Director. He then has had a career in the Pharma Industry and is currently Vice President, Head of Global Renal Medical Affairs at Baxter Healthcare.

Peter’s interest in vasculitis began as a junior doctor and was cemented by the very first person he saw on his first day as a Consultant in North Wales. The need to improve care and get new effective therapy options is critical for patients with rare diseases such as vasculitis and Peter remains passionate to support in all ways he can.

Peter is married to a nurse and has two grown up children. He enjoys walking, running, reading, sport and loud music.

Diana Shonfield

I am Diana Shonfield and I live in the North-West with my husband and have two young adult children. I have worked in various positions in quality, within pharmaceuticals, medical diagnostics and clinical trials – being a Biochemist by training.   

So, when I was diagnosed with GPA (ears, lungs, joints, kidneys) in August 2020, during Covid lockdown, it was a huge shock to find myself as a patient & to be on ‘the other side of the fence’. 

I utilised my background to press for diagnosis and I am grateful for the support from VUK and the multidisciplinary medical team in Manchester to get me to clinical remission – though it has taken longer than expected.

I have adjusted to living with a chronic condition and I hope I can help support others in finding their pathway to get best medical and mental-health advice, and live the best lives they can.

Claire Tolliday

Hi, I am Claire and I am delighted to be joining Vasculitis UK as a trustee.

I was diagnosed with large vessel vasculitis in 2021 and found the information available on the website (and from John Mills directly) was so helpful as a reliable source that I could have confidence in. I have worked in health and social care for four decades and had never come across anyone with vasculitis in all of that time. I am one of those people who likes to take control of my situation by being as well-informed as I can possibly be.

I still work full time in adult social care as a local authority Head of Service and my professional background is mainly as a welfare rights/housing rights and debt advice worker. I have found that the ability to work at home full-time has been invaluable to enable me to remain working which is something that is important to me. I am also a volunteer for a local Credit Union and our allotment committee as well as a local environmental group.

In my spare time my passions are my garden and my allotment, which although they now take me much longer to do and I need some help, are really big parts of my life. The current trends in no-dig gardening and re-wilding are also very helpful! I live in Suffolk with my husband and our rescue Bedlington terrier, so getting out to the countryside and our beautiful coast is also something that we enjoy together.

Zoi Anastasa – Director of Operations

My name is Zoi and I was diagnosed with GPA vasculitis in November 2014. I was lucky to get an early diagnosis and react well to the treatment. However, Vasculitis has changed my life.

I am honoured to represent VUK in EURORDIS as an ePag in the RITA ERN. I am also active in our local vasculitis support group. Additionally I am a member of the Patient Participation Group of our local GP surgery.

I live in Plymouth, Devon, with my partner. I am half Greek, half Swedish and I am fluent in both languages.

In my free time I like to do craft workshops with friends and their children, read books, bake cakes, and appreciate and photograph nature with my camera.

Vasculitis UK Medical Advisors

Professor David Jayne

Professor Jayne is Reader in Vasculitis at the University of Cambridge, and Honorary Consultant Physician and Director of the Vasculitis and Lupus clinic at Addenbrooke’s Hospital. He is a Fellow of the Royal Colleges of Physicians of London and Edinburgh and Fellow of the Academy of Medical Science.

David has undertaken numerous studies into vasculitis and is the current President of the European Vasculitis Society (EUVAS). His research group in Cambridge conducts international clinical trials in vasculitis and earlier phase clinical trials and biomarker studies in vasculitis and lupus.

Professor David G.I. Scott

Professor Scott will be the Chair of the new Vasculitis UK Research Review Panel.

Professor Scott trained at Bristol Medical School and has previously worked in the Rheumatology units at the Royal National Hospital for Rheumatic Diseases in Bath, Southmead Hospital in Bristol and the Queen Elizabeth Hospital in Birmingham (with Professor Paul Bacon) as a trainee before becoming consultant Rheumatologist at the Norfolk and Norwich University Hospital (NNUH) in 1988.

Professor Scott was appointed honorary Professor of Rheumtology to Norwich Medical School in 1998. He is now honorary consultant at NNUH having recently retired from full time NHS work. David still continues to see patients with vasculitis and has a longstanding and ongoing interest in clinical aspects, epidemiology and treatment of the systemic vasculitides.

Professor Richard Watts

I am Richard Watts. I was born in North London and qualified in medicine at Oxford University. I trained in rheumatology at the Middlesex Hospital, Addenbrooke’s Hospital, Cambridge and the Norfolk and Norwich Hospital, Norwich.

I am a consultant rheumatologist in Ipswich and senior lecturer at Norwich Medical School and Visiting Professor of Rheumatology at University Campus Suffolk.

My research interests are the epidemiology and the causes of vasculitis, together with the informational needs of patients and their carers.

For relaxation I enjoy alpine hiking, growing my own vegetables, and steam engines.

Professor Charles Pusey

Prof Charles Pusey is Professor of Medicine, and Head of the Renal Section in the Department of Medicine at Imperial College London. He is also Consultant Physician and Lead Clinician in the Renal Directorate at Imperial College Healthcare NHS Trust.

Prof Pusey is a clinician scientist with a particular interest in autoimmune renal disease, including primary systemic vasculitis. He runs a large multidisciplinary vasculitis clinic, and has made a major contribution to clinical trials in this area. He directs an internationally competitive laboratory research programme studying mechanisms of autoimmunity, inflammation and scarring in glomerulonephritis.

Vasculitis UK Volunteers

Laura Whitty – Grants Co-ordinator

Laura has experience of administration and management in every sector, including the NHS, local government and education. As a result Laura has a raft of skills that are utilised by the team at the EATC4Children. Projects undertaken so far include the launch of a new website and logo, building the team’s social media presence, organising fundraising events for Lupus UK, co-ordinating PPIE involvement in an upcoming animation, assisting the team in grant applications across all work streams and acting as study co-ordinator for the Juvenile Localised Scleroderma PRIOR study.

She has a passion for improving the lives of children, whether that be through education, safeguarding or medicine and is continually inspired by the work of the clinicians and scientists that make up the Experimental Arthritis Treatment Centre for Children (EATC4Children)

Laura tells us …. “In my spare time, I support my parents as a connected carer for their foster children, enjoy travelling during my holidays, see as much live music as I can and failing that (especially in the winter!) read as many books as I can get my hands on.”

Kevin Soper – Vasculitis UK Newsletter Editor

Hi, I’m 48 years old, I live in Ashford, Kent , and I work as a Technical Operator within the food industry, although my background has been within the print Industry with over 20 years experience.

My dealings with VUK came about after the sad passing of my sister Claire who at the age of 38 was diagnosed with a very progressive form of Wegener’s Granulomatosus in 2010, as a family we had no understanding of this disease and through VUK we decided to find out all about it and to help raise awareness by fundraising so other families wouldn’t have to go through what we did.

Kath McIntosh

I first became ill in early 2016, and it took almost a year for me to be referred to a consultant and to have diagnosis of an autoimmune condition. Since then I had a long period, where I was very unwell which resulted in long hospital stays and intensive treatment, culminating in the amputation of a toe, that just died.

My official diagnosis is livedoid vasculitis; it has always primarily affected my digits, turning them ischaemic and leading to frostbite-type damage. Most of the medications I take, focus on suppressing my immune system and improving my circulation.

The charity helped me hugely with seeking further support and professional opinions when my local doctors were at a loss. Helping admin the Facebook support group is my way of saying thank you and keeps me up-to-date with all of the medical research with this rare disease.

I work part time from home because of the fatigue and fluctuating flare ups I often still experience. When my health allows it, I like knitting, spending time with loved ones and playing video games and board games.

Jayne Hardman

I’m a 48 year old mother of 2 boys, happily married to Martin. I was diagnosed with limited Granulomatosis with Polyangiitis (WG) in June 2014. Nothing about what then happened could ever be described as “limited”.

I suffered with a total nose collapse & had it removed in November 2017. I wear a fantastic magnetic prosthetic nose.

I am very keen to eliminate the phrase “Limited Wegners”.

I finally achieved remission in November 2017 with Ritiuxmab after 2 1/2 years of methotrexate failed.