A support group for you

They are also a place to get information about these conditions. Members value the opportunity to hear about other people’s experiences and it cannot be underestimated how positive it is to know that you are not alone in living with these challenging conditions.

PMR is an inflammatory condition of unknown cause. It is recognised to be an autoimmune illness. It causes severe pain, tenderness and stiffness in the large muscles around the shoulders, hips and back. It often makes walking and doing everyday tasks very difficult. Typically getting out of bed in the morning and standing and walking is very difficult. Consequently, it causes significant disability and can severely impact on quality of life. It uniquely affects people over the age of 50 with the peak number of people being in their 60’s and 70’s when diagnosed. It tends to affect women more than men and around 1 in 1,000 develop PMR each year.

While some people recover after a year or two of treatment with corticosteroids (steroids) some individuals may have disease resistant to treatment and need long-term steroids. This in turn can cause problems as long-term steroid use can cause weakening of the bones, stomach issues, diabetes and high blood pressure for example.

In the case of the more serious condition, GCA, catastrophic blindness can occur if it is not diagnosed and treated swiftly and sadly there have been cases of some who, having lost their sight, felt so hopeless that they committed suicide. Blindness can occur in about 20% of people. GCA is a disease known as ‘giant cell’ because of the presence of very large inflammatory cells in the wall of the arteries, causing them to swell and sometimes become blocked. The condition affects large arteries of the head, neck, upper limbs and the main artery of the body – the aorta. If GCA affects the arteries of the head it is known as temporal arteritis because the temporal arteries to the side of the forehead can be visibly swollen. If GCA affects the aorta and other large blood vessels in the body it is known as large vessel vasculitis. This can cause the aorta to become swollen with the possibility of an aortic aneurysm developing which can be fatal. It is thought this can occur in about 10% of people with large vessel vasculitis.

GCA exclusively affects people over the age of 50 and primarily in those between the ages of 60 and 80 years. It is a rare condition thought to affect about 19 people per 100,000 over the age of 50 years. It typically affects women more than men and those of northern European descent. GCA is an auto-immune disease (disease of the immune system). People who get it have done nothing to get it, and scientists still do not know how it starts.

PMR and GCA are related conditions and people can have both at the same time. Both can make people feel very unwell and isolated. Living with a lesser known illness means friends and family do not always understand what is wrong with you and therefore support is not so forthcoming. This means that a local support group can be invaluable.

To find out more about PMR or GCA then contact the charities helpline on 03001115090 or see their website, www.pmrgca.org.uk. To find out more about the Chichester support group that meets every month then please see the website or email the group organiser [email protected]