MDS UK Patient Support Group

What is MDS – comprehensive information booklets for patients:

• Download the MDS Patient Handbook – all you need to know about MDS to start off with – paper copies available via our office – please ask -
• Find out about Iron Overload and iron chelation which can become relevant if you are receiving transfusions on a long-term basis: Iron Overload Book
• Bone Marrow Transplant:  7 Steps handbook about Bone Marrow Transplant. A paper copy can be
  obtained free of charge from LLR – Leukaemia and Lymphoma Research

Newsletters:

• First MDS UK Patient Support Group newsletter – we are working on the second issue.
• MDS Foundation Fall 2011 newsletter – including articles on the MDS Edinburgh Symposium – chaired by Prof David Bowen, as well as a contribution by Canadian MDS patient William Pearson, about the MDS UK work at the Edinburgh Patient Forum.
• MDS Foundation Fall 2011 Newsletter
• MDS Foundation’s Spring 2011 newsletter
• MDS Foundation’s Fall 2010 newsletter
• MDS Foundation’s Summer 2010 newsletter
• MDS Foundation’s Autumn 2009 newsletter

Physician and nurse presentations given at our Patient Forum Events:

Current treatment in MDS – the Irish Perspective – Dr Helen Enright, Dublin, Ireland 17/06/11

Transplantation - Transplantation for Myelodysplasia – Dr Catherine Flynn Consultant Haematologist St James’s Hospital, 17/06/2011

Current treatment in MDS – the Scottish Perspective, Edinburgh 20/05/11

Presentation: Welcome to MDS UK Patient Support Group Patient and Family Forum, Cambridge 12/11/10

MDS and Fatigue - Presentation: Making the Most of your Energy & Taking Control of Fatigue, Cambridge 12/11/10

Blood transfusions - Presentation: Understanding myelodysplasia and Introduction to Blood Transfusion

Quality of Life - Presentation: What is Quality of Life?

General MDS UK Presentation, Patient Support Group Information, London 24/09/10

Dr Chris Dalley – Royal Hallamshire Hospital, Sheffield, London 24/09/10

High Risk MDS and hypomethylating agents – Dr Kavita Raj,  Consultant Haematologist Guys and St Thomas’ Hospital, London Sept 2009

Our display information about MDS UK Patient Support Group:

• Download our leaflet regarding MDS – stocks to be ordered via our main office
• Poster for display in hospital waiting rooms – feel free to print and use – or request a laminated copy via our office
• Want to start your own local MDS group for informal chat and mutual support ?   Download 2 documents: Tips and guidelines to follow, as well as a poster you can adapt and use for the hospital or GP waiting room: Patient Support Group Guidelines and a Poster for display in hospital or GP waiting rooms

Other helpful information material:

• If you are receiving the treatment azacitidine/Vidaza – and possibly experience a rash at the injection site, evening primrose oil can help.  Please read the following information and always check with your nurse or physician first: Evening Primrose Oil