History of childhood arthritis

Brief History

Modern treatments have hugely improved the outcome for children, brought meaningful pain relief, modified the disease process and enhanced their quality of life. A brief history of significant developments from the past is important because:

1. it shows the impact of arthritis if left untreated.
2. it helps parents understand what they are working to avoid in their children.
3. many parents may still blame modern treatment for the effect on the child (sight problems, limited growth, fragile bones etc) without understanding how the untreated disease itself affects the children.

We know from ancient skeletons that arthritis has occurred for centuries. Caravaggio painted a picture of a child with inflammatory arthritis in 1608. Thomas Sydenham first described arthritis in adults as a separate disease in 1680, but there was little development until the recognition that a number of ‘rheumatic diseases’ arose from disorders in connective tissue. In 1897, Sir George Frederick Still described a condition of spiking temperatures, rashes and joint swelling in twenty two children aged one to five years, who were in the Hospital for Sick Children, Great Ormond Street, London. Systemic onset juvenile arthritis is still sometimes referred to as Still’s Disease. In the same year in France, another doctor independently published his description of similar symptoms in children, and called the disease Marfan’s Disease.

In 1928 the International League Against Rheumatism was founded in England and there was a growing research effort to describe, classify, treat and cure arthritis in adults. No cure is yet available, but considerable progress continues to be made with new treatments and international agreement about classifications of arthritis in adults. Arthritis in children is however different from that in adults.

In 1968, Dr WS Copeman, an influential rheumatology pioneer, said he could not better the description by an unnamed non-medical writer cited below of a girl with Still’s Disease. This description is distressing but recognisable to parents of children with systemic arthritis today. It is included here because it indicates the impact of the disease on children before modern drugs and therapy. In Still’s time, these children depended upon nursing care, and laudanum (an opium based substance) for pain relief, and were often left with joints in fixed positions.

‘A mild attack may pass off with no worse legacy than some slight limitation of movement in one or two joints, or it may leave the child’s arms or legs looking a bit odd, one longer than the other. But if the disease is at all severe …The ordeal for patient and doctor may be long and bitter.’

Dr. Copeman wrote ‘rheumatism is one of the many medical problems where knowledge and understanding on the part of the patient makes a great deal of difference.’[1] This remains the case today.

Origins of modern treatment approach for children

In the 1970s and 1980s there was a strong hope that new cortico-steroid drugs would provide a cure for childhood arthritis. Dr Barbara Ansell, working at the Canadian Red Cross Hospital at Taplow, England, and Dr Ross Petty in Vancouver, Canada, were pioneers dedicated to developing medicines and therapy for these children. Large doses were administered to the children and a regime of aggressive daily exercises and hydrotherapy (movement in water) were prescribed. The children were encouraged to remain active and mobile and to develop independent living skills. No cure arrived, and the high doses proved damaging to children. These high doses and most compounds are no longer used, but there remains a distrust of steroids because of its usage in the past.

The aggressive approach to daily exercises and hydrotherapy does remain, and clinical experience of practitioners strongly indicates that these activities considerably improve the outcome for children. There is very little research evidence about how best to carry out these therapies in the long term, and no research about how best to help families carry them out at home.

[1] W S C Copeman (1967) Arthritis and Rheumatism. London: Evans, page 9.