She first experienced leg pain and skin tightness however did not initially see a doctor about this as it would come and go.
I remember being so angry and upset that the GPs had dismissed me so many times but on reflection and 15 years on, I now realise that diagnosing systemic sclerosis is not easy.
Mithi, from Glasgow, had scleroderma symptoms, which she began to see in early 2009 when she was 17. She first experienced leg pain and skin tightness however did not initially see a doctor about this as it would come and go. Then she began to see symptoms for Raynaud’s, reflux, a reflux cough and persistent colds during the Winter of 2009. She visited the GP numerous times, and the symptoms were dismissed as a result of the cold weather in Aberdeen where she was studying. As the warmer months came, her symptoms continued to worsen – she started to have poor grip and cold hands/feet even when the weather was warm and most significantly, she’d lost a considerable amount of weight, and her skin had changed across her body. The GP suggested she might have an eating disorder due to her weight loss, which was a shock. Her mother knew something was wrong and rushed her to their family doctor, who took numerous blood tests. It was found that she had Diffuse systemic sclerosis a year and half after she noticed those first symptoms.
Mithi, who is an SRUK Patient Advocate, said: “I remember being so angry and upset that the GPs had dismissed me so many times but on reflection and 15 years on, I now realise that diagnosing systemic sclerosis is not easy when symptoms can seem so vague and develop sporadically. I know of many people with it who took years, even decades to be diagnosed so in hindsight, I feel I’m actually one of the lucky ones to have been diagnosed after 1.5 years of my first symptoms. Getting that diagnosis when I did changed the trajectory of my life but saved my life as well. I hope the #SayScleroderma film goes some way to bring to light this curious and devastating condition.”