Kevin Weston, chairman of Lupus UK, has visited some of the members of the recently re-formed Pembrokeshire Lupus Group at their monthly meeting near Haverfordwest.

The chair was there to not only show support from the national charity, but also to discuss with us the recent report by the British Society of Rheumatology - ‘Rheumatology in Wales: The State of Play’ and the recent National ‘Guidelines for the Management of Systemic Lupus (Erythematosus) in Adults’.

Also, Mr. Weston, in addition to offering the on-going support by Lupus UK to the group, offered the possible support to the community and those working for Hywel Dda University Health Board NHS.

Lupus UK following the success of funding a specialist Lupus nurse in North Wales would also like to extend this to our community by offering our NHS a funded specialist Lupus nurse to work with local services including our doctors, nurses and patients who treat and have this rare autoimmune disease.

For those not familiar with Lupus, it is often referred as the ‘hidden illness’, as many Lupus sufferers look healthy, but suffer from many different symptoms and illnesses in any part of the body. Lupus is a rare auto-immune disease that mostly affects woman, but can also affect men and children and it is incurable. The challenge for doctors is to diagnosis and treat patients as no two patients are alike. Some of the common manifestations include joint/muscle aches and pains, extreme fatigue and weakness, increased risk of miscarriage, various skin problems, rashes from sunlight/UV light (including the classical ‘butterfly’ rash on the cheeks and nose), flu-like symptoms and/or night sweats, inflammation of the tissues covering internal organs with associated chest and/or abdominal pain, seizures, mental illness or other cerebral problems, headaches, migraine, kidney problems, oral/nasal ulcers, hair loss, haematological disorders including anaemia, swollen glands, poor blood circulation causing the tips of fingers and toes to turn white then blue on exposure to cold (Raynaud’s Syndrome) (Lupus UK).

One member said: “Until I came to this group, I never met anyone else with this illness and I have learned so much from other members, it has made a real difference in my life.”

If you are interested to attend future meetings, please contact Wendy Diment at [email protected] or text 07920 052514 or look on Facebook for the closed, private group called Pembrokeshire Lupus Support Group. Family members and friends are also welcome.

The group is looking to include guest speakers from various backgrounds including helpful therapies such as massage, aromatherapy, mindfulness, keeping fit, healthy eating has been suggested so far. If you would like to help with working with our members in these therapies, please let us know.