When someone is diagnosed with MPGN or C3G, it can be an overwhelming experience. Patients and their families often feel isolated and helpless – we know, we’ve all been there!
MPGN/DDD Support Group is here to provide you with support and understanding, primarily in the form of information, news and general advice. We also arrange general meetings at which issues of particular relevance and importance to our needs are discussed, and action decided upon (see our News or Home Pages for details).
The rarity of these diseases means that there is limited information and support available to patients and their families. MPGN/DDD Support Group hopes to plug that gap.
Do look at our ‘Useful Links’ page to discover more resources and websites which you may find helpful.
Renal Diet
At some stage in your disease, diet may become an issue. For those of us struggling with a difficult and restricted diet, there are a number of resources which try to make the task easier:
‘Eating well with kidney failure’ by Helena Jackson, Annie Cassidy and Gavin James is available on Amazon or through the National Kidney Federation website.
The National Kidney Federation also has a downloadable cookery booklet. NKF UK Diet Page
The US sites DaVita and National Kidney Foundation (US) each devote entire sections of their websites to food and cooking.
Kidney Care UK have the Kidney Kitchen, which contains recipes and information about eating renal friendly food.
Children
The US site Kidneeds is dedicated to supporting families and finding a cure for C3G.
Facebook can also be a source of information and support. A thriving facebook group run by our own Sarah Whittall is devoted to MPGN/DDD – ‘ MPGN and DDD Kidney Support Group’.
Another facebook group, ‘MCGN/MPGN Type 1’, deals solely with MPGN Type 1. It is open to members and it’s very easy to join – the instructions are on its main page.
Discovering that you, or a loved one, have one of these diseases can be a frightening and bewildering experience. We hope you will find our Support Group of benefit – please don’t hesitate to contact us and give us your feedback.
Better still, join us and become part of our friendly, supportive and very positive community!