UK LGLL Group
Posted by

LGLL patient group meeting

UK LGLL Group
Posted by
26 Nov 2015

An opportunity for large granular lymphocytic leukaemia patients and their families to meet up, share experiences and find out more about the disease from one of the world's leading clinicians in LGLL disorders.

We are holding our third UK large granular lymphocytic leukaemia (LGLL) patient group meeting on Friday 27th November 2015 and would like to invite all patients and their families to attend.

The meeting will run from 10am until 2pm, in Room 226 of the Learning Centre, at the University of Birmingham, located by University rail station. Lunch is provided and tea and coffee will be available from 9:30am.

Professor Paul Moss, Professor of Haematology, Honorary Consultant Haematologist and Director of Research and Knowledge Transfer at the University of Birmingham, will join the meeting from 10am to 11am to present on what is currently known about LGLL. Dr Ian Litchfield, an expert in patient collaboration in service development, will be attending the meeting to present on findings from our recent patient group survey and there will be an update on the development of a specialist clinic and register for LGLL in the UK.

Past meetings have offered not only a fantastic opportunity for LGLL patients to meet and share experiences with other patients and some wonderfully supportive carers and partners, but to hear from a knowledgeable clinician with a particular interest in LGLL disorders, and in collaborating with patients to develop a rare disease clinic and register.

For more details and to confirm your attendance and any dietary requirements you may have please contact Louise Bentham directly on 07885139124 or via email at benthaml@adf.bham.ac.uk.

If you can't make the event don't worry as we also have an active UK LGLL Facebook group where you can engage with others and share your experiences. 

Comments

Lizzie Goates
03.12.2015

I was delighted to be asked to attend this patient group meeting last Friday. Professor Paul Moss's presentation was particularly interesting as he discussed the findings of a particular protein that was recurrent in many patients presenting with LGLL. The protein labelled STAT3 was noted to be worth pursing more research into as it could lead to a biological targeted treatment being issued for all patients with LGLL. We discussed the potential of this leading to a different type of Tyrosine kinase inhibitor, which is a type of treatment which blocks signals that tell a cell to grow and divide. This then can slow or stop cancer cells from growing. This is extremely exciting news, but very early days for LGLL patients.

 

There was also a presentation delivered by Dr Ian Litchfield that looked at the outcome of a patient survey the group had led. One of the main issues, amongst the many that was evident from the survey was the extreme fatigue that so many LGLL patients suffer from. Discussing this further with the group, I found that this symptom can be very difficult to convey to friends, colleagues and families, especially when their knowledge of blood cancers is limited.

 

Continuing on further into the afternoon, the group was extremely friendly and welcoming, and one of their main aims is to raise as much awareness about LGLL as possible. Not only did I learn more information about the condition and the daily struggles that sadly so many endure with the disease, I felt that this group offered a huge amount of support to anyone who has LGLL or to anyone who has a family member of friend effected by it. I really would urge many more to come to this support group and feel as I did, confident that support is out there and that action is being taken for everyone with this type of blood cancer.