Support groups

Lyn

I’m Lyn, I was diagnosed with Limited Cutaneous Systemic Sclerosis (CREST Syndrome) back in 2014. It can be very challenging to live with a chronic autoimmune condition that not many people have heard of and often know little about! The Bedfordshire Support Group is there, with the help of SRUK too, to help support each other on the journey that we are all on. Come along and join us at our next meeting it would be lovely to meet you.

Avtar

One dark February evening in 2016, I saw the first signs of the condition. My hands were hurting and all my fingers had gone white with no warning whatsoever. I made an appointment with the GP, who was concerned with the condition of the hands. Secondary Raynaud’s was diagnosed and recently one of our group members said: ‘what is it secondary to?’ I thought that was a very good question as I never thought about it as I was just muddling through. I asked the hospital on my next visit and was told that it is secondary to a very mild case of scleroderma, and I have been under the rheumatology unit at the local hospital ever since.

I set up the Birmingham group because I very selfishly wanted to know all I could about this disease. I tried searching the internet first. If I wanted to search the internet, doctors told me only to go on the NHS sites. There was nothing around Birmingham or the surrounding area, so I needed and wanted to see folks who could shed light on what was happening to me as well as seeing what this condition could possibly develop into.

Una and Claire

I felt very alone in my battle with Scleroderma. Through attending SRUK annual conferences in the Royal London Hospital I realised that there were treatments available to patients in England which do not appear to be available to Northern Ireland patients. This was the driving force behind my fundraiser. I knew awareness of the condition needed to be raised in Northern Ireland as well as the UK.

Since undertaking my fundraiser I have found many fellow patients of whom I was completely unaware. In our conversations we have compared our various health conditions and our various treatments. The satisfaction I have derived from discussion with fellow patients and their advice and encouragement has been inspirational.

Through this group we offer support and encouragement for people living with scleroderma and Raynaud’s, sharing of available treatment between one another, raising the profile of the disease and ensuring co-operation between medical authorities and endeavour to further highlight the need for government support. The condition is incurable at present but with timely and proper support life quality can be enhanced and life expectancy significantly extended. There is better support from Medical Care England and there is no reason why such a standard of support should not be available to patients here in Northern Ireland. A Support and Action Group must endeavour to rectify this treatment imbalance.

Nicola

My name is Nicola and I was diagnosed with scleroderma in June 2021 after I’d noticed my Raynaud’s symptoms becoming worse. I’d never heard of scleroderma before and initially, I spent a lot of time searching the internet to understand the condition and scared myself. Luckily, I was seen by very good health care professionals who corrected a lot of what I read!!

I wanted to set up this support group to help others in the area diagnosed and living with scleroderma and Raynaud’s. I hope it will be a positive place where people have access to and receive the right information, learn helpful tips through the experience of others and develop friendships.

Celia

I was diagnosed with scleroderma over twenty years ago, and although it has been a life-changing experience, I have found that having accepted the condition and having adjusted to it, I have been able to live life as near normally as possible. In this respect, SRUK has been extremely helpful over the years, beginning with their telephone support line, then their ongoing informative publications and enabling me to contact and meet others in my area with scleroderma. Our group has grown steadily over the years and we meet informally every three months. I know how valuable being able to talk to other people with scleroderma is to me and facilitating others with the condition to do the same is a very positive experience.

Cheryl

Cheryl runs a coffee morning in near Salford Royal in Manchester, which meets on a Wednesday every month.

Pam

I’m Pam and I live in Wirral and I work as a Research Project Coordinator at The Royal Liverpool Hospital. I was diagnosed with Systemic scleroderma 4 years ago, I also have Raynaud’s in both my hands and feet, the SSc affects my joints mostly and I also have Barrett’s Oesophagus, from the GERD associated with SSc, but I am determined not to let this condition get the better of me!

Knowing very little about Scleroderma when I was diagnosed, I began to think that there may be other people like myself, who would like to know more and get together to share experiences, which led me to the idea of forming a network for the Merseyside and North Wales area. Through the network I hope we can give each other support, friendship, laughter and practical advice. I hope that you can join me on this new and exciting venture.

Lucy

My name is Lucy and I am the local contact for Norfolk. I have lived just outside Norwich all my life, and so have most of my family and friends. I have had Raynaud’s since being a very young child, and a mixed connective tissue disease which first came to light in 1994, when I experienced severe inflammatory arthritis. In 2004, I was diagnosed with limited systemic sclerosis, and latterly I have also developed features of lupus.

I said I would be a support leader because I wanted to provide others with the type of advice and support I was looking for when I was diagnosed. As a health professional who has always worked in rheumatology, I recognise I also have quite a lot of helpful information that would benefit others. Due to my health situation I now work very part-time but I like spending time with friends, drinking tea and eating cake, reading, cuddling my cat and knitting. I also have an addiction to home design programmes.

When I was diagnosed, I wanted further information about the condition, and I looked to the internet to see what charities were available to provide that advice or support, where I found The Scleroderma Society (now SRUK).

Lorraine

I was diagnosed with scleroderma in 2013, and had Raynaud’s phenomenon previous to this. I have diffuse systemic sclerosis and ILD with scl70 antibodies.

I was aware from the start of the creation of SRUK, when the two charities came together. I often direct newly-diagnosed patients to the website and also share any relevant info pertinent to any questions they ask on our Facebook page.

I am hoping our group will reach some Scottish members who are looking for some local support and friendship. The reason I became a support group leader is that I felt there were a few people around my local area looking for some friendship, guidance and support so they don’t feel alone with the disease. It’s amazing when people realise there is another scleroderma sufferer in their local area, or not too far away.

I am also a volunteer trainer for a local partnership called LGOWIT. I help run self management courses for people with long-term health conditions as I am a qualified facilitator trainer. This means I feel able to encourage and support people.

Linda

My name is Linda, and I am a member of Scleroderma and Raynaud’s UK. I was diagnosed with Raynaud’s in 2000 and Scleroderma in 2007. I was medically retired 2010 as a senior social worker. I am currently a Shared Lives Carer for two young ladies with learning disabilities and Autism. I have been a carer for 4 years. I love reading crime books and watching documentaries on criminal minds and crime films.  Before becoming a social worker, I was a prison officer and this I guess is how I became interested in this type of books and programmes.

Liz

I’m Liz and in 2023 we set up the Wales-wide Online Support Group.  In 2024, in addition to our regular Zooms, we held face-to-face meet-ups in Narberth, Bridgend, Swansea, Wrexham and Cardiff.

I am hoping that in time we’ll be able to hold in-person groups right across Wales, as we find pockets of people who live close enough to one another to be able to meet up. At the same time, we will keep the online group for Wales-wide support and action, discussing relevant issues (maybe with a speaker), and for those who can’t travel.

Some of our members are newly diagnosed (or awaiting diagnosis) while others have been living with Scleroderma and/or Raynaud’s for many years.  We also welcome those managing similar conditions.

It’s so good to know there are others who understand some of what you’re going through and to be able to share tips that have helped us. To remind each other that we are not alone and make the best of every day.

So why not come along to our next meeting?  It would be lovely to meet you.

Gill, Sara and Lucy

Avtar

One dark February evening in 2016, I saw the first signs of the condition. My hands were hurting and all my fingers had gone white with no warning whatsoever. I made an appointment with the GP, who was concerned with the condition of the hands. Secondary Raynaud’s was diagnosed and recently one of our group members said: ‘what is it secondary to?’ I thought that was a very good question as I never thought about it as I was just muddling through. I asked the hospital on my next visit and was told that it is secondary to a very mild case of scleroderma, and I have been under the rheumatology unit at the local hospital ever since.

After setting up the Birmingham group, Avtar recognised the value of men coming together to support one another and agreed to take on the facilitation of a new online men’s support group.