Avtar's story

Before my diagnosis, my life was peachy, and I used to feel invincible. I had a successful career as a technical trainer with the RAC, then I joined the AA and worked my way up again. I still miss my job and the camaraderie. We loved to travel as well; I had the confidence back then and it was fantastic. I used to be one of those people who never saw the doctor but today, things look very different. 

One cold night in February 2016, everything changed. We had gone out and we stopped at a cashpoint. When I got back in the car, all eight fingers suddenly turned white. We had no idea what it was. I saw the GP, and her face dropped instantly when she saw me. I was initially told it was Raynaud’s Phenomenon, and I was referred to Solihull Hospital, where I had regular blood tests for different things.

In the meantime, I did some research and found out that when the onset occurs after the age of 40, it is likely to be secondary Raynaud’s. It was after someone asked me what my Raynaud’s was secondary to that I asked the consultant when I went back to the hospital. He said in a very matter-of-fact way that it is secondary to scleroderma. So, I asked for a second opinion, and I saw another specialist. They confirmed the diagnosis, and I was finally given more information about this condition and all the screening tests I would need. I now have annual checks to see if my condition has progressed. Quite recently, these showed a decline in lung function, but I only learned that I have developed interstitial lung disease when I read it on a hospital letter. It makes me breathless, but that can be aggravated by anxiety as well.

My condition affects my life in many different ways. I had to take redundancy under capability, which effectively ended my career within the training team of the AA. Fatigue is a big part of it, and stress and anxiety also exacerbate this. I have to take things much slower now and I need to pace myself. I often have to sit down, even at home. My pace of walking is much slower now as well.

I am prescribed a cocktail different medications, including statins, methotrexate, folic acid, aspirin and omeprazole. I have been given various drugs, but the side effects can be horrendous. I recently tried sildenifil; and was surprised to learn this is also known as Viagra! But I experienced dreadful side effects and was advised to stop taking it immediately. I now have infusions at the hospital every month, and I had a port-a-cath line fitted due to my veins collapsing. An infusion can take all day. Life has turned upside down in the past six years. This disease is like a python that grabs you and squeezes everything out. It’s not letting go.

The SRUK Support Group Midlands

The more people know about this condition, the better. It is quite obscure, and I had never heard of it before. I decided to reach out because I wanted to meet others who may be in a similar situation but found it difficult to make connections locally. I posted on the HealthUnlocked forum to ask if anyone wanted to meet up, and several people responded. I eventually suggested that we all try to meet in person, and this was the start of the Support Group, when myself, my partner and three others met in a pub in Birmingham for the very first time.

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. We started WhatsApp and Facebook groups, and also reached out via the HealthUnlocked forum. Having somewhere to share our struggles can be very helpful, and the Support Group is ideal for this. For example, I was having trouble swallowing and ended up having an endoscopy, so I reached out to the group to see if anyone else had the same experience, and this was very useful. Setting up this amazing group has definitely been worth it.

Avtar is also a patient speaker. He attended the Institute of Biomedical Science Congress in September 2023, an event designed help scientists enhance their professional skills. He gave a short presentation, speaking about his experience of living with Scleroderma and Raynaud’s, and how these conditions have affected his life.    

I have now attended two meetings with leading scientists and doctors as a patient speaker. I talk about the lived experience of these conditions, and then sometimes they ask questions at the end. It’s just about telling your story and showing that side of the condition to people who may not know. I wouldn’t say I was worried, but I did feel apprehensive the first time I did it.

SRUK have always supported me in doing this, and they also helped me create a PowerPoint presentation, which really helps at the time. I think it’s important that people know about these kinds of opportunities. Last time, we arrived at the event and found it was a big one, but for my talk, we were just in one room. There were only a handful of people in there, all of them interested in what I had to say.

I have pictures in my slideshow from before my condition developed, so I could show them the ‘before and after’. The pictures I showed of a Raynaud’s attack are all of me, so I could say ‘these are my actual hands’, and some people were quite shocked at the reality. It gives a different perspective, because it shows them the real-life experience which is different to what they might see in the laboratory. For example, I now have a port-a-cath fitted, and I asked them: ‘does anyone know what this is?', and they all shook their heads. So, I explained it, and hopefully they have benefited from that. I was also able to meet and talk to some of the scientists and lab technicians who attended the event. It was all light-hearted, there was nothing heavy about it. I think they were grateful to hear about the patient perspective, and I’m so glad we have done it. Bring on the next one!