Sara’s story

Sara received her diagnosis in July 2021, after experiencing swollen fingers, fatigue and breathlessness. She visited her GP several times before being referred to the rheumatologist at her local hospital, where she was told that they thought it was scleroderma. They took blood tests, and she was given a booklet. She returned in October 2021 when it was confirmed that she has limited scleroderma and she would need to have lung function tests. She asked twice to be referred to Sheffield Hallamshire Hospital; but the second time this was agreed and she is now under their care. 

I was diagnosed in July 2021, but I was getting symptoms for about a year before that. It all started with swollen fingers, they were like little sausages, and I still get it now. I went to the GP about it, but I didn’t get very far. It got to the point where I had to change my wedding ring and I just knew that something wasn’t right. I kept on persevering with the GP, but it took about four or five visits before I was referred to the rheumatologist.

I went to the local hospital where I was diagnosed, but I asked to be referred to Sheffield and I am glad about that as the care is much better. They are very thorough, and they are looking into everything properly. I am still under my local hospital for dermatology, who are great. I have had Raynaud’s for many years before and feel I can cope with it. I am used to it I suppose, it doesn’t bother me as much. 

To help manage my symptoms, I always moisturise my skin every day. I saw my dermatologist recently, and I was prescribed four different creams. I also try to keep walking as much as I can. I am quite limited with that now, but I feel that it’s so important to do what you can in moderation. I used to do five or six miles, but now if I do three miles then I have done well. During my lunch break I will walk round the park, it may only be about half a mile, but I know that it helps to keep my body moving. I went to the gym for seven or eight years and I felt better, but I have given this up and this has really upset me. I do hand exercises as I am affected by swelling in my hands and in my fingers and I find this really frustrating, but doing these exercises helps to keep me going. I am also taking hydroxychloroquine. I didn’t think that it was making a difference, and I said this to the doctor and so they paused it, but then things got worse, so I know it was doing something and now I am back on it! I need to have eye tests because of this, but no other medications at the moment.

My advice to anyone diagnosed with scleroderma is to make sure that you connect with SRUK. I also strongly recommend joining a support group, as this is really good for information and support. Some have WhatsApp groups as well, and there is always someone there who can help you or answer any questions. Not everyone can come to the meetings, but there are lots of us in the WhatsApp group!

Always make sure that you get as much sleep as you possibly can. I find that the fatigue is one of the worst symptoms for me, and during the working week I am normally in bed by 9pm. This very important and it does make a difference as the fatigue can be really bad; and I think that everyone probably agrees to that.

My diagnosis has altered my outlook on life, absolutely,100%! Now, I live each day as if it’s my last. If I want to do something and I am well enough, I will try to just do it. I am so grateful for the simplest things in life, I just appreciate everything now, and I do feel that I am lucky and I really want to do things while I can. A couple of years ago, we really wanted to go Las Vegas. I had been there about 20 years ago but never with my family. One day I just thought to myself: ‘Why are we waiting?’ So, we went in 2022. If you are able to do something now, I would say to try and do it. Life is short, and you just have to make the most of it while you can.

Today, I am concentrating on raising awareness of scleroderma. I had never even heard of it before I was diagnosed, and in March 2023, I was interviewed live on BBC Radio Sheffield. I was very nervous obviously, but it actually went very well.

The interview came about because I heard that they had broadcast a segment on scleroderma last year, and I contacted them to ask if I could listen to it. They said that unfortunately it was no longer available, however I could come in myself, to talk about my own experience on the morning show hosted by Paulette Edwards.

Paulette already followed my Instagram, and then one day she messaged me to say ‘when are you coming in?’ So, I did!

It was all quite straightforward on the day. I was just asked to come to the studio and I was told that the interview would be broadcast live at midday. I arrived at 11.30 with my husband. They made us a drink and we could hear the radio while we waited. At about 12.10 I wondered what was happening, but then they took me into the studio.

They began by playing a clip from another member of the scleroderma community who had been on air last year, whose daughter has scleroderma. Then the interview started, with Paulette doing an introduction and asking me some questions. In preparation, I had taken a sheet with some information bullet points, but I didn’t even look at it in the end! They also talked to Sue Farrington, SRUK’s Chief Executive, about the condition and the work of the charity.

I really enjoyed the whole experience, and it was really nice to meet Paulette. I want to keep on raising awareness of scleroderma and its impact. I shared my story in Take A Break magazine last year, and I will continue with my dedicated Instagram that follows my scleroderma journey.

Since the interview was broadcast, other scleroderma warriors have contacted me on Instagram, just to say thank you for doing this. To do something that you find so nerve wracking is actually a real confidence boost in the end. Now I think to myself: ‘I have done that, what else can I do?'

 You can follow Sara via Instagram @sclerodermawarriorsara