An Aberdeen woman living with a painful condition that causes reflux and skin tightening has starred in a new charity film to raise awareness and funds for the rare disease.
Mithi Ahmed-Richards has scleroderma, a rare autoimmune disease that affects the skin and connective tissues. In people with scleroderma, the immune system attacks healthy tissues, causing hardening and scarring.
The disease is hard to diagnose because it can affect different parts of the body and take many forms. About 19,000 people in the UK have scleroderma, which can sometimes be life-threatening. All types of the disease affect a person’s quality of life.
Mithi first noticed symptoms in early 2009, when she was 17. She felt pain in her legs and noticed her skin tightening, but the symptoms came and went, so she did not see a doctor at first.
During that winter, her symptoms worsened. She developed Raynaud’s phenomenon, reflux, a reflux cough, and frequent colds. Despite multiple visits to her GP, her symptoms were dismissed as effects of Glasgow’s cold weather, where she was studying.
As the weather warmed, her symptoms did not improve. She began to lose grip strength and had cold hands and feet, even in warm weather. She also lost a significant amount of weight, and her skin changed. Her GP suggested she might have an eating disorder, which shocked her.
Her mother insisted on further tests. After many blood tests, Mithi was diagnosed with diffuse systemic sclerosis a year and a half after her first symptoms appeared.
Now 34, Mithi said she felt angry and upset that her symptoms were ignored. But after 15 years, she understands that diagnosing systemic sclerosis is difficult because symptoms can be vague and appear sporadically. She said many people take years or decades to get a diagnosis, so she feels lucky to have been diagnosed within 18 months.
Mithi believes that early diagnosis changed her life and saved her. She hopes the new charity film, #SayScleroderma, will raise awareness of the disease.
The film also features Alex Santana, a former Eastenders actor and reality TV star from Glenrothes. Alex lost her sister to scleroderma. The film, produced by Scleroderma & Raynaud’s UK (SRUK), includes seven people affected by the disease. It highlights the challenges of living with scleroderma and the urgent need for faster diagnosis.
Alex shared that her sister, Giselle, passed away three years ago after stem-cell treatment. She described how scleroderma affected Giselle’s hands and feet, making everyday tasks difficult. Alex hopes the film helps people understand the complexity and impact of the disease.
Sue Farrington, Chief Executive of SRUK, said that Scleroderma Awareness Month in June is vital to increase attention on this under-researched but painful condition.
She explained that the charity is using the month to launch the film and raise funds for important research. Key barriers to progress include fragmented data, few diagnostic markers, and a lack of effective treatments. Donations will help overcome these issues and speed up research.
“Our goal is to understand what causes scleroderma and use that knowledge to develop better tests and treatments,” Farrington said. “This will improve the lives of people affected and support health professionals who manage these complex conditions.”
Related Topics:
