Lupus: Saving lives through knowledge and support
LUPUS FOUNDATION of Jamaica is observing Lupus Awareness Month during the month of October under the theme ‘Children and Youth With Lupus: Saving Lives Through Knowledge and Support’. Unlike most chronic or lifelong conditions, lupus is considered a disease of the young, with an average age of onset of 22 years and up to 20 per cent of persons being diagnosed as children.
Awareness and support are key as early diagnosis and access to appropriate care and support can go a long way to save lives and change futures of those affected.
The exact causes of lupus are unknown. However, what is known is that it is an autoimmune disease, where the immune system loses its ability to tell the difference between a foreign intruder and a person’s own tissues and cells.
The immune system produces auto antibodies that identify the person’s own normal cells as foreign, and eliminate them. The result is an autoimmune reaction, which causes inflammation that affects specific organs, including the joints, kidneys, skin, or any organ where you have blood vessels.
Inflammation means that the affected body parts become hot, red, swollen and sometimes tender. If the signs of inflammation are long-lasting, as they can be in lupus, then damage to the tissues may occur and normal function is impaired.
According to paediatrician Dr Petagay Scott-Brown, lupus is a genetic predisposition that interacts with environmental factors to cause the illness. There is impaired immune response that includes production of antibodies, proteins normally produced by the body to fight infections that attack different organs and so cause damage.
“Environmental contributors include ultraviolet light exposure, that is sun exposure can cause or worsen rashes or cause flares, hormonal exposure, for example oestrogen, hence increased incidence in females, certain viruses and certain medications. It is definitely not infectious and cannot be prevented,” Scott-Brown said.
Scott-Brown said symptoms in children include fevers, fatigue, weight loss, loss of hair, various rashes, sores in the nose and mouth, joint pains and swelling, kidney disease, fluid around the heart or lungs, seizures and hallucinations, memory loss, and clots in blood vessels.
“The symptoms vary for different persons. It is not that one patient gets all possible symptoms. There is no cure, but treatments are available to control the disease. These treatments suppress the overactive immune system and so limit the damage that it causes. Children can learn to manage their symptoms with regular visits to their doctor, taking the prescribed medication, using regular sunscreen, proper rest and stress management,” Scott-Brown said.
LUPUS IN CHILDREN USUALLY MORE SEVERE
Children with lupus may have similar manifestations as adults. However, childhood onset lupus is usually a more severe illness and has greater disease damage over time. Children with lupus may develop kidney and/or brain disease within the first two to three years of the diagnosis that in turn becomes a lifetime burden.
Dr Desiree Tulloch-Reid, consultant rheumatologist and president of Lupus Foundation of Jamaica, has indicated that lupus in children and youth generally manifests more severely with more frequent involvement of critical organ systems such as kidney, nervous system and blood, causing lupus to be, unfortunately, one of the significant medical causes of death among youth in Jamaica.” Dr Tulloch-Reid further adds that the disease can also have a far-reaching impact on a child’s physical, academic and social development.
“Lupus is a serious lifelong autoimmune condition that occurs in high rates in Jamaica and Afro-Caribbean populations, with an estimated six thousand Jamaicans living with the sometimes-life-threatening disorder. Greater awareness in the wider society can promote earlier detection and access to effective treatment, reduce stigma and encourage greater support for those living with lupus and their families,” TullochReid said.
Dr Tulloch-Reid further adds that the disease can also have a far-reaching impact on a child’s physical, academic and social development.
The Lupus Foundation of Jamaica is inviting corporate Jamaica and the public at large to join in supporting the campaigns aimed at increasing awareness and improving outcomes of children and youth living with lupus. The public is invited to visit the foundation’s website or social media, or contact the centre for more information about upcoming events and activities, the work the foundation is doing, and guidance on how to join, donate or volunteer.