Ian's story

At the time of his diagnosis, Ian felt very isolated. He found that no else seemed to know anything about scleroderma, so he had to try to adjust to this new normal and find information on his own. Then, one day in 2024, he saw an article in SRUK News about the Wales Support Group, and he decided to reach out, where he finally found the information and support he was looking for. 

This is Ian's story.

My journey started in March 2021, when I came down with flu-like symptoms. As we were at the end of lockdown, it was assumed that it was COVID, despite my having a negative test.

After a week I was back on my feet, but still not right. Another week later I still had aching joints and tiredness. I phoned the COVID helpline, who said it was the effects of the virus and to give it another few weeks, but that time passed and there was no improvement, so I called my GP who suggested a blood test. By then, it was early May.

Over the next few months, I had many more blood tests and GP phone appointments. There was a thought I may have long COVID. By August I was deteriorating fairly rapidly, my fingers, hands and legs were stiff, the fatigue was getting worse, and my Raynaud’s was becoming a problem; I had it for a few years before but no numbness or pain, just discoloration occasionally.

At the end of August, I had lost two-and-a-half stone, looked pale, thin, and very unwell. I phoned the surgery and insisted to be seen by a doctor. I was seen that afternoon I was thoroughly examined and put on steroids. A few days later, the same GP called me to say that I may have scleroderma, but the rheumatologist at the hospital would confirm this as I had been referred. I had that appointment on 20 September 2021 and entered a room full of doctors from rheumatology and dermatology.

I was asked loads of questions and examined all over, it was like being on display! Scleroderma was confirmed, but its full title was diffuse systemic sclerosis. I remember saying: ‘so now we know, what do we do to get better?’ I was then told that it was a lifelong, incurable autoimmune disease that was irreversible; and life-limiting, not life-ending.

On the way out, I was given a leaflet about arthritis and scleroderma, which gave a sugar-coated summary of the disease, possible symptoms and some medications used. On the back page was a list of places to get further information, and that's where I discovered SRUK.

I phoned the helpline and explained my situation. The person I spoke to was very helpful and offered to send out many factsheets. These turned up a few days later, and I spent that afternoon reading up for the first time what may lie ahead for me. Up until that point, all I wanted to do was get back to work. I was a carpenter and always fit and healthy, but I soon realised that I would have to rethink my future and adapt many aspects of my life. I'm very independent, expect no help, very practical-minded and mentally strong, but this was an extremely challenging time, and I had to dig deep to adapt my mindset to my new circumstances.

A week later I attended rheumatology and dermatology again and was given a bag of medication, skin creams, and dressings. It was also explained that they were going to try PUVA light therapy to soften the skin, that would start the following week. It only lasted a few minutes in the light chamber, like a stand-up sunbed, and this happened three times a week.

Unfortunately, this had to stop, as it was causing a nasty reaction. From there, I was prescribed Mycophenolate. This was mid-October, and I was now in a wheelchair. At the end of November, I had severe headaches for two days, and then I had my usual check-up with rheumatology, with bloods, blood pressure and urine tests. 

My consultant then came out to tell me I was in renal crisis, and I would have to stay in for tests. I spent a week on an assessment ward before being transferred to the renal unit, where kidney tests, ultrasound and a biopsy took place. By Christmas, my blood pressure was lowering and my kidney function had dropped to 13% and stable, so I could go home on Christmas Eve.

During my stay, I had an MRI, CT scan, lung function tests, gastroscopy, ECG, echo and chest X-rays, to find the full extent of the disease. In the New Year, I continued having fortnightly check-ups with nephrology to monitor my kidneys, as well as keeping an eye on developing symptoms of scleroderma. My blood pressure was fluctuating and kidney function slowly deteriorating. I was trying to control this with a healthy diet: I cut out alcohol, salt, processed foods, additives, and preservatives as advised by the renal dietitian. By then, there was talk about dialysis being the next step as my kidneys were failing.

I was very reluctant and asked the consultant how long I could carry on without dialysis. She replied immediately ‘you are looking at weeks, months or so at the most.’ Dialysis it had to be!

Things moved rapidly after that. I had a meeting with the dialysis nurse, who explained everything and decided on peritoneal dialysis that I could do at home. This type of dialysis also allowed my kidneys to continue to work slightly, and if the SSc drew back then their function could improve. By now, I was extremely ill and going downhill very quickly, and I lost a further stone-and-a-half. I phoned the renal consultant who called me to hospital to have an emergency operation to start dialysis. My kidney function had now dropped to 7%, but they discovered that I had COVID and I was sent home! A week later, I was called back for the operation, and despite me still being COVID positive and the surgeon reluctant to operate, my consultant overruled his decision, as the risks of waiting outweighed the risks of operating on a COVID patient.

I had the operation on 22 March 2022, and was discharged the same day. Dialysis started two weeks later and by mid-April I was starting to get better and my mobility was improving. Dialysis, Mycophenolate and all the other medications seemed to be getting to work, and I was out of the wheelchair. I learned to walk again, and I was becoming more and more active.

I still attended check-ups at the renal unit and I started to see the same faces each visit. It was nice to chat to others in the same renal condition as myself, to talk about our treatment and symptoms and how we were all coping. We all understood what we were going through. I felt this was something lacking at the rheumatology unit. I was in a waiting room with many others, but no one had what I had, no one had even heard of this illness. I hadn't spoken to anyone else who had SSc. I felt like I was tracking solo across a vast desert with no landmarks, no one to ask the way or if I was going in the right direction, what was over the horizon or if anyone had ever been here before.

In mid-July, I started having a sore shoulder, it was nothing unusual. I was no stranger to pain and aches over the last year or so. But, after four days the pain was severe, and I made a big sling to take the weight off my arm. On the Monday, I had a routine blood test and the nurse enquired about my arm. I explained and she advised me to go to A&E. I reluctantly went, booked in and half an hour later was seen by triage. I explained the symptoms and the background with SSc. She went away and then came back and said it was probably just part of the illness and if it persisted to see my GP. I left, but returned shortly after. I wasn't happy, this was beyond normal pain; also it was a very hot day but I was cold. I was wearing joggers and a jacket when everyone else was in shorts and a T-shirt. Back in A&E I had tests and X-rays and after a few hours a doctor came out to see me, to tell me I was being sent to Morriston Hospital. I had sepsis. The pain by now was terrific. I didn't feel well and just wanted to sleep. When I got there, I was given a 21-day dose of IV antibiotics and slowly got better. I came home on 15 August 2022. 

While in hospital, I had more tests due to advancing SSc symptoms. I had facial numbness, restricted mouth opening, trouble swallowing and a hoarse voice. I was referred to neurology for the numbness and I had an MRI scan. The result was that tightening of the connective tissue had put pressure on nerves leading to restricted feelings. I was then referred for a barium swallow test, that found two-thirds of my swallow reflex wasn't working and my vocal cords had thickened. There were no treatments for these problems at this point, but I was told that if the swallowing worsened then there were procedures that could be done to aid the intake of solids and liquids.

By January 2023, I started tests to see if I was a suitable candidate for a kidney transplant and had all the pre-op tests prior to going on the waiting list. But by April, my kidney function had slowly increased and stabilised at 17%, so I was taken off the list. It has remained at this level ever since, and at the moment my dialysis has been stopped and now classed as chronic kidney disease.

I still have regular appointments with nephrology who monitor both kidney and SSc symptoms with my medication continually adjusted. My blood pressure fluctuates constantly with the medication altered accordingly to suit. As the autumn of 2023 arrived, I was finding it increasingly hard to walk and the fatigue was incredible. I decided to buy an electric wheelchair and although I hate being in it, I have a new found freedom and can get around easily without the exhaustion. In April 2024 I started doing short walks, but I still use the wheelchair for anything longer.

 In the winter issue of the SRUK magazine, I read an article about a member who wanted to set up a Welsh support group, and was looking for others in Wales to have group chats via Zoom. I called the helpline and gave my details. A week or so later I received a letter from Liz, giving me the details of the next call. I took part, and for the first time in two-and-a-half years, I spoke to others with the same condition. Up until that point all the knowledge had been slowly gathered, but now there was a wealth of information, tips and advice dished out during the hour. It was very worthwhile, and I would encourage anyone who is newly diagnosed or a long-term sufferer, just to reach out and talk to others who are, and know what it's like living with this illness. I think the information gleaned from the charity and from groups like this can fill the gaps in the feedback we get from our consultants.

I am in no way unique with this journey. Our symptoms vary greatly and everyone suffers in their own way, but I am sure it's been a devastating and life changing prognosis for all of us. Whereas in the beginning I thought I could fight this battle on my own, I now see the advantages of pooling our experiences, pulling together, and helping each other both practically and emotionally. I would like to thank all those who work for the NHS for bringing me back from the brink, twice, and also to everyone who puts time and effort into the running and organising of this charity. Thank you.

Last updated: June 2024