6 March 2011

Harrogate and Knaresborough MP Andrew Jones showed his support for the British Thyroid Foundation’s campaigns at a parliamentary reception held to mark international Rare Disease Day on 28 February.

rare disease meeting

Left to right: Andrew Jones MP, Janis Hickey, Director of the British Thyroid Foundation, Alastair Kent OBE (Chair of Rare Disease UK) and Julian Huppert MP for Cambridge.

Janis Hickey, Director of the Harrogate-based charity, and Judith Taylor, Trustee, attended the reception at Westminster to raise awareness of two of the less common thyroid disorders – thyroid cancer and thyroid eye disease.

In both areas, the charity is funding projects that endeavour to improve the patient experience through symptom recognition, early diagnosis and immediate referral to appropriate medical expertise.

Collectively, a total of 3.5m people in the UK live with a rare condition at some point in their lives – the equivalent to one person in 17. Rare diseases are often chronic, progressive, degenerative and often life-threatening, but despite this, there is no coherent strategy to deal with rare diseases in the UK leading to delays in diagnosis, a lack of adequate healthcare and a lack of information for many rare disease patients.

Approximately 5,000 people develop thyroid eye disease in the UK every year. It is an eye condition in which the eye muscles and fatty tissue behind the eye become inflamed. This can cause the eyes to be pushed forward, creating a staring appearance.

The eyes and eyelids can become swollen and red and in some cases swelling and stiffness of the muscles that move the eyes can cause double vision, facial disfigurement and, sometimes, blindness.

Many people with thyroid eye disease are left with a permanent change. Surgery can improve appearance and in more severe cases this can be combined with other treatments such as steroids and radiotherapy.

The disease can have an impact on psychological and social well-being, and many patients with the disease are never offered treatments that improve quality of life.

Thyroid cancer is considered to be a rare cancer, but the number of cases is increasing each year. According to statistics from Cancer Research UK (CRUK), over 1,900 people (including more than 1,400 women) were diagnosed with thyroid cancer in the UK during 2006, and it is now the 18th most common cancer among women. The CRUK statistics team estimates that the lifetime risk of developing thyroid cancer in the UK is now one in 842 for men and one in 324 for women.

Thyroid cancer has a very high cure rate, and most patients go on to live a full and normal life.

Rare Disease Day, an annual campaign organised by charity alliance Rare Disease UK, aims to highlight the need for good quality care, treatment and support for people with rare diseases.

Andrew Jones MP said: “Having previously supported the British Thyroid Foundation in the constituency, I was keen to show my support for this Harrogate-based charity in Westminster. Rare diseases such as thyroid eye disease and Thyroid cancer don’t always receive the attention they should due to the low prevalence of each disease. Rare diseases and disorders collectively however, will affect 3.5 million people in the UK during their lifetime. It is important therefore to raise awareness for rare diseases and I am pleased to have lent my support at the International Rare Disease Day Reception.”

Janis Hickey, who suffered from Thyroid Eye Disease herself, added: “We are delighted that Rare Disease UK’s latest report emphasises the need for a coordinated UK-wide strategy for the diagnosis, treatment and research of rare diseases. Andrew Jones MP has backed previous British Thyroid Foundation campaigns, and I am grateful to him for taking time out of his busy schedule to once again support us.”