|Hi. I’m Elaine Holland and I am the Chair, Treasurer, Newsletter Editor, Website Manager and a Contact for the North West Lupus Group. I have been serving on the committee since 2010, becoming Treasurer in 2011 and Chair in 2013. I am originally from Darwen, near Blackburn but now I live in Stockport.
I was diagnosed with Lupus in 1998, one year after graduating from University with a computing degree. I spent quite a while in denial and it was only when I had a major flare in April 2000 that I realised I could no longer live my life like I did as a student. I had qualified as an IT and Business Studies teacher in 1999 and was working full time at that time. However, I realised that, for me, having Lupus and teaching were not going to go together. I changed my job to computer support in the NHS in Newcastle. Around this time, I became a member of the North East Lupus Group’s committee.
I moved back to the North West in 2005 and almost straight away started planning my wedding. Five months before I was to get married, my hair started to fall out. I was not going to let Lupus ruin my big day, so I bought a real hair wig and my friend did an amazing job styling it for me. In 2008, I found out that I had developed Lupus Nephritis and needed treatment with Rituximab. Since then, my Lupus has been quite stable.
In 2010, I felt that it was time for me to get involved with Lupus UK again. After attending the annual Information Day and AGM, I approached Val Wilson to see if there was anything I could do to help and she roped me on to the committee. My first project was to set up our Facebook group. I then gradually took on more roles!
Over the years, the information I have been able to get through Lupus UK has been immense. The support that it provides is invaluable. I have always been a people person, so having this opportunity to help people who have been affected by Lupus has been a natural progression. I really enjoy the work that I do for Lupus UK. It has given the opportunity to meet and help many people, which in turn has helped me to live with my Lupus.
My name is Susan Frankel and I am the secretary of the North West Lupus Group.
I volunteered for the committee at the AGM in 2016 and became secretary a few months later when Janice stepped down. Subsequently, I became the representative of the North West group on the National Council which meets twice a year in London. At those meetings, I report back on our activities and learn what the other groups around the country are doing – we do get some good ideas that we can bring back to our area.
My Lupus was diagnosed in 1997 although, like many people, I had had symptoms for several years before that. As part of my role, I attend the coffee and chat groups at Oldham and MRI when possible and aim to support others with their illness from a position of experience. Having worked in the NHS for many years, I understand the frustrations for staff and patients that can result from the way the system works. One of the things I aim to do is to help in educating clinicians and find ways we can work together better.
Recently, I was appointed to the Patient Advisory network of Lupus Europe which is based in Belgium. This network was set up to ensure that the views and experiences of people with Lupus were fed into research studies and drug development. This should be exciting so keep an eye on the newsletter for any updates.
|Hello, I’m Ray Wilson and I’m the Membership Secretary of North West Lupus.
Many of you will remember my late wife, Valerie Wilson, who was Secretary and Newsletter Editor of the group until her untimely death in 2013. I’d been in the background until then, lending a hand with the computer side of things when Val needed it. As she was already running the membership database it seemed natural for me take over and I joined the Committee five years ago.
Our involvement with Lupus started in 1988, although we did not know it at the time. We were on our first family holiday to America and the shock of emerging from Miami airport into the heat and humidity of southern Florida was the trigger that Val always claimed was the onset of her Lupus. She had chronic fatigue during our three week stay, although she put on a brave face for the sake of the children.
The early symptoms of Lupus continued back in the UK, as Val held down a full-time job as a Junior School teacher as well as Beaver Scout leader. It took another five years before we had a name for her condition – Systemic Lupus Erythematosus or SLE – a disease that was new to both of us.
With the help and support of her doctors in Blackpool and Manchester, the worst symptoms of SLE were brought under control. Careful management of her work sessions and rest periods was still needed, however, as she continued full-time teaching until she was granted ill-health retirement in 1999.
The early months of retirement were a dark period in her life, as she drifted aimlessly without any sense of purpose. Gradually she emerged out of depression with renewed vigour as she started working to educate the public about Lupus and to give help and advice to fellow sufferers.
Her work for Lupus UK took her around the North-West, to the Parliamentary Committee for Lupus and to an International conference in Madrid. She became involved with several other local health groups and her energy seemed boundless, until you realised that it needed coping strategies and organised rest periods.
She had more than a decade of this period of fulfilment in her life. She became Secretary of the Lancashire and Cheshire Lupus Group, which later became North West Lupus – the largest regional group of Lupus UK. In this capacity, as well as the four different Coffee and Chat Groups she managed, she became known to many of you.
Now she has gone, my purpose on the Committee is to give background support, just as I did when Val was still alive. Like her, but in my own small way, I find satisfaction in being able to help sufferers of a condition that I have only experienced from the periphery.
|Hi, my name is Sammy Ainsworth and I have been a committee member for three years. In 2018, I also became a trustee of Lupus UK.
I live with my husband Bill, two children Jack and Sophie and much loved golden retriever Rosie near Clitheroe in Lancashire. I am originally from Camden in London. I still go back to visit family often but I have loved living in the North West for over 25 years.
Just over 5 years ago my daughter Sophie was diagnosed with Lupus when she 14 at Alder Hey hospital. She had been ill for nearly six months and although her diagnosis was upsetting, we were relieved to finally realise what we were dealing with and learn slowly how to help her.
After a few months I reached out to the charity and our involvement as a family began. Janice McCann was the first person I spoke to about my daughter and was incredibly supportive. It was so good to know we were not on our own and that there were many people in the North West who were there to help, support listen and become friends. Five years on and I love volunteering with the charity. The committee and many others have become good friends and I am very pleased to serve as a trustee, something I see as a great honour. I am very keen to help represent some of the views of parents and families who are affected by lupus.
I am also Chair of the young people’s charity RAiISE which I helped to set up with my daughter and four others. We help to support young people who live with a long term invisible condition by offering guidance and support to teachers. Very often when a condition is invisible mistakes can be made and life at school can be made even more difficult for a child and young person living with a chronic and long term condition.
For the last year I have also been a board member for the European Network of Arthritis in Children, ENCA, working with other charity and support groups across Europe. It is good to work with other parents who have similar experiences and work on projects together to raise awareness and try to make things better for children.
My career has always involved working with young people. I was a primary school teacher for a number of years in Manchester which I really enjoyed.
Now I work at Alder Hey Children’s Hospital in Liverpool. My work involves letting young people and families have a voice in the design of research and raising awareness of why it is so important that research is designed in the right way for them. No week is ever the same and I love now working at the hospital that looked after Sophie so well.
In my spare time I love spending time with my family and friends.
I have been a Guide Leader for Girl Guiding UK for the last five and half year and love having fun doing this! I am also very fond of music, attending concerts and going to the theatre.
One of my favourite things to do is to travel. I love everything from walking in Scotland and the Lake District to travelling much further abroad. I have been lucky to visit some great places and the list of countries I still want to visit keeps growing. Fingers crossed for a lottery win!
It has been good to meet so many other members from the North West over the last few years. We are lucky to have such a friendly and caring group
|Sophie has been a member of the North West Committee for the last few years
She was diagnosed with lupus over five years ago when she was aged 14 after being ill for six months.
Sophie who is now 20 will start her final year at Durham University in October where she is studying English literature.
A couple of years after being diagnosed Sophie set up the charity RAiISE.
RAiISE stands for Raising Awareness of Invisible Illness in Schools and Education. The charity raises awareness of a variety invisible illnesses that effect young people including lupus, diabetes, mental health conditions, colitis, CFS and many others. RAiISE has also created a pack to be used in schools to help teachers support young people.
Sophie has been a member of the NIHR Involve Research Advisory group for the last two years and has presented on the issues young people face who are living with a chronic condition at many conferences and workshops including Eular, The Royal Society of Medicine and The Houses of Parliament.
Away from charity work Sophie is a huge fan of film and would one day like to work in film or television production. Other interests include music and travelling as much as she can.
Sophie is a big supporter of Lupus UK who have been a great help to her after her diagnosis and enjoys being part of our North West group.
Hello. My name is Lorraine Hulse and I have been a member of the committee of the Lupus UK North West Group for 3 1/2 years. I am married to Peter and we are Sally’s parents (they’ve done their own introductions). We live in a small village near Chester. We also have 2 sons, Adam, and Matthew.
My involvement began when Sally was diagnosed with SLE in December 2013, after a number of prior diagnoses over the previous 12 months. I was determined to discover as much as I could about the condition and it’s impacts. As a retired midwife I had some knowledge of SLE, but not in someone so young. As a mother, while relieved at last to know exactly what Sally’s illness was, I was naturally very worried about her. Eventually I made contact with Janice in the North West group, agreed to attend a most enjoyable group event at Old Trafford, and then volunteered to join the committee at the following spring’s AGM. I found that being able to talk to people with Lupus and their loved ones helped me to come to terms with the illness and gave me a much more positive outlook. As they say, ‘a problem shared is a problem halved!’ It was therefore a natural step to make myself available to help as much as I could. As well as attending quarterly committee meetings, I help out at bake sales, NW group events such as AGM, coffee and chat groups, and fund-raising events. As someone who also has an auto immune disorder, psoriatic arthritis, I also have a natural empathy with fellow sufferers.
Hi everyone. I am Peter Hulse, Sally’s Dad and Lorraine’s husband. My story is basically the same as Lorraine’s, but whereas she spent her whole career in hospitals, I was a Business Analyst by profession and the archetypal big(ish) chap who gets sweaty palms going for a flu jab! Of course, with Sally’s diagnosis that pretty well changed overnight and anything I could do to help combat this condition became key. It was therefore a natural step to volunteer to join the committee. Actually, Lorraine and Sally volunteered themselves and presented me with a ‘fait accompli’ – I was volunteered too! I’ve never once regretted it though. The opportunity to help combat this debilitating condition even in only a small way is the least I can do for Sally, and others like her both now and in the future. We also meet some truly inspirational people, who live life to the full in spite of their problems. In my spare time I play guitar and sing in a couple of folk/country bands which keeps me out of mischief and helps with fund-raising too.
Hello! My name is Sally Hulse and I am 21 years old. I have been on the North West Committee for 3 years and 7 months now. I am originally from Cheshire where I grew up with my parents, Lorraine and Peter, as well as my two older (annoying) bothers. Currently, I am in my fourth year at Coventry University studying Events Management after completing a placement year in HR.
I was diagnosed with Lupus (SLE) in 2013 at the age of 15. I had been poorly for one year before I received my diagnosis which followed shortly after a referral to Alder Hey Hospital. To get a diagnosis at last was a huge relief for me and my family. While not an easy diagnosis to receive, at least then it can be treated appropriately. As I’m sure many of you can relate, I was slightly ‘in denial’ after being diagnosed, therefore, I left all the research to my mum, who found the charity Lupus UK. After attending Lupus UK events, learning more about my body and accepting that Lupus is now a part of me, myself and my parents decided to become part of the committee team.
Finding the right medication for my body and symptoms took some time; however, after finding these, I am pleased to say I have now had a healthy body and a positive mindset regarding my Lupus for almost 6 years.
On commencing my placement, I was worried that a 9-5:30 job (and the stress that comes with it) would have an impact on my Lupus, but I got through the year with no flare-ups. This was a huge deal for me as it shows you can live a ‘normal’ life and achieve the same goals as your peers. I must constantly manage the fatigue that is so common to those of us with Lupus. For example, this means occasionally having to say ‘No thanks’ to a night out with friends, but, in my experience, they will understand.
My main interest is attending the gym on a regular basis. The main reason for this is that I find it helps my mind and makes my body feel stronger. The support I have gained from Lupus UK has been inspiring and I hope I can give the same support to others through my role as a committee member.
My name is Sandra Ratcliffe – Mum to Elaine Holland. I became involved with Lupus UK whilst Elaine was working up in Newcastle, attending information evenings when I was staying with Elaine. When Elaine was still in the North East, it was their turn to host the National Annual General Meeting, so my husband and I went over to help the committee – Elaine being a committee member by this time.
Elaine and Scott came back to live in Lancashire, and Elaine joined the North West Committee. Just before the group’s AGM in 2013, Val Wilson asked me to join the committee.
Although I don’t have Lupus myself, and not having heard of it before Elaine was diagnosed, I have found the information days very enlightening. I have enjoyed the friendship the group gives me as a Mum whose Daughter has Lupus.