Sue, 63, had Raynaud’s as a teenager and experienced symptoms for some time before being diagnosed with scleroderma.
Following surgery on her right leg that would not heal and left her in excruciating pain, Sue was eventually referred to a rheumatologist who told her that she had scleroderma.
She is also living with lupus, Sjögren’s and systemic sclerosis-associated pulmonary arterial hypertension (SSc-PAH), a serious complication of scleroderma.
When I was first diagnosed, I was a little shocked; but also relieved that I finally had a diagnosis. Suddenly everything fell into place. I had a reason for feeling so tired and knew that I was not going insane! I then had further tests and investigations, and, because I had already been diagnosed with Raynaud’s many years ago when I was 16, this led to the thought process of scleroderma which was confirmed along with the Sjögren’s Syndrome. I found that once a diagnosis had been made, everything became so much easier to understand.
There is no cure for scleroderma and many people will experience disease progression, meaning that the condition gets worse over time as it impacts upon the body’s internal organs. This means that symptoms are likely to change or worsen, which may have a dramatic impact upon quality of life.
As well as living with considerable gastrointestinal involvement, Sue has also gone on to develop SSc-PAH, which occurs when fibrosis leads to high blood pressure in the pulmonary arteries, placing extra strain upon the heart. She has now had to make considerable adaptations to her life, as simple activities once taken for granted such as walking the dog, shopping, cooking and even getting dressed are now much more difficult. The daily challenges of living with scleroderma have also meant that Sue has had to make some much bigger changes. These include moving from a house to a bungalow, and taking early retirement from the NHS job she loved at just 49.
Life has become limited in many ways, both with large obstacles and with the small, seemingly unimportant things that have now become a challenge. However, I manage as best as I can, help is always around me and my husband cares for me, so we have ‘adapted’ together.
For Sue, it is important to raise awareness of the fact that Raynaud’s may be a sign of an underlying condition and the warning signs of scleroderma.
Not everyone understands the symptoms to look out for and the impact of these conditions. I was 16 when my Raynaud’s was diagnosed, but then it took years to find out that I had scleroderma. People need to be more aware of what can happen. Raynaud’s is an under-estimated illness: the pain can be unbearable. One day I would like to wake up with no pain. Once you are diagnosed it all falls into place, and then you can understand it as well. Then, when you do understand it, you can learn to live with it and to deal with it.