The UK LGLL group has been set up to provide a central point for LGLL patients and carers interested in developing a specialist clinic and register in the UK. The site will provide information about meeting arrangements, meeting notes and updates on service developments.
LGLL is a rare lymphoproliferative disease with signs and symptoms varying in severity between patients, but commonly including neutropenia, recurrent infections, anaemia, debilitating fatigue and an enlarged spleen. LGLL is also associated with autoimmune disorders, most commonly rheumatoid arthritis.
As with many rare diseases, diagnosis often takes several years and, even with a diagnosis, knowledge about prognosis, management and treatment, varies from centre to centre. This lack of information can be frustrating for clinicians and creates a great deal of anxiety for patients and carers.
A specialist clinic and register at one central point in the UK would enable a more coordinated approach to diagnosis, treatment and management and lead to a greater awareness of the disease and the impact on patients. Most importantly, a more coordinated service would provide an opportunity for patients to take part in clinical research studies designed to provide a greater understanding of the disease and the development of treatments.