Avtar Gill has Raynaud’s and Scleroderma and lives with his partner in Birmingham. His career within the training team of the AA ended early when he took redundancy due to the impact of his diagnosis, and he now works for Tesco on a part-time basis. Avtar is very active in supporting others who are living with scleroderma and set up the SRUK Support Group Midlands in 2018.
Before I turned 40, I was one of those people who never went to the the doctor and was not taking any medications. Today, it is a very different story. I was diagnosed with secondary Raynaud’s in 2016, after my symptoms began without warning when I had a sudden, severe Raynaud’s attack. I saw my GP, who made a referral to Solihull Hospital, where I was diagnosed with systemic sclerosis (scleroderma). Today, I am prescribed a cocktail of different medications to help manage this condition.
It was during the process of my diagnosis that I first reached out to try to find others who may be in a similar situation, and I soon realized that there was a gap at local level in finding peer support for people with Raynaud’s and Scleroderma.
After making some contacts online I eventually suggested that we all try to meet in person, so myself, my partner and three others met in a pub in Birmingham for the very first time. This was the beginning of the SRUK Support Group Midlands.
It was enlightening to talk to other people who were also living with Scleroderma and Raynaud’s, and since everyone felt the same way, we quickly agreed that our meetings should continue. Partners are still very welcome, as these conditions can cause a great deal of stress and anxiety, so all-round support remains incredibly important.
Our little group has quickly grown to around 30 members. We promote our meetings on social media including via our Facebook group; that is a closed group and a safe space to share any concerns or seek advice. As well as a place to meet new people and find friendship, the group is also somewhere to share our struggles, which can be very helpful since there may well be someone else who has been through something similar.
Before the pandemic, we would meet in person every quarter on a Sunday. During the first lockdown, we found that Zoom was the best platform on which to stay connected. When life eventually returns to normal, we will probably combine our online catch-ups with face-to-face meetings, so that we can include anyone who cannot get there in person but would still like to be a part of what we do. Setting up this amazing group has definitely been worth it.
There are 2.5 million people worldwide who are living with scleroderma, including around 19,000 within the UKSource
If you would like to find support and connect with other people in your local area through an SRUK support group, please visit sruk.co.uk/find-support/support-groups or call Scleroderma & Raynaud’s UK on 020 3893 5998 to get started. Other RAIRDA member charities – LUPUS UK, Vasculitis UK and the British Sjögren’s Syndrome Association – also help support groups for people with other rare autoimmune rheumatic diseases conditions.