UK LGLL Group
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Large Granular Lymphocyte Leukaemia (LGLL)

UK LGLL Group
Posted by
03 Jun 2015

UK LGLL patient meeting and Facebook group

A UK LGLL meeting will take place on Friday, 12th June 2015, from 10am to 2pm in Room 226 of the Learning Centre at the University of Birmingham. Professor Paul Moss will present on LGL disorders between 12:00 and 1:00pm. Lunch will be provided.

In November 2014, a group of UK patients and carers, who met via the US LGLL Facebook group, attended the first meeting at the University of Birmingham. This meeting provided an opportunity for everyone to meet and share experiences of LGLL, and to hear from Professor Paul Moss, Consultant Haematologist and Head of Cancer Sciences at the University of Birmingham, who has a particular interest in LGL disorders. The outcome of this meeting was that we would work to improve services for LGL disorders. Dr Ian Litchfield, a senior research fellow at the University of Birmingham and expert in service development, who also attended this meeting, agreed to work with the group to ‘capture’ (i.e. formally record) the patient experience in order to strengthen applications for development of a specialist LGLL rare disease clinic and register.

UK LGLL Facebook Group. The UK LGLL group has been set up by patients to provide a central point for LGLL patients and carers interested in developing a specialist clinic and register in the UK. The site provides information about meeting arrangements, meeting notes, updates on service developments, and informal support for patients and carers.

LGLL is a rare lymphoproliferative disorder 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, particularly rheumatoid arthritis.

As with many rare diseases, diagnosis can often take 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. We believe that 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. A more coordinated service would also offer 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.

If you are interested in attending the LGLL meeting please contact Louise Bentham (by email LMBentham@aol.com or telephone 07885139124) or Melita Shirley M.Shirley@bham.ac.uk

Comments

Anonymous
07.06.2015

Hi I have just been diagnosed with LGLL, I am really keen to join the Facebook group however I do not want the postings to show on my page where all my contacts can see, can you help me?

08.06.2015

Hi Bridget Mary, Thank you for your post. The UK LGLL facebook group has a closed status so that posts made by the group can only be seen by current group members. The group is very supportive and we welcome new members. We will be looking out for your request to join. Best wishes, Louise