When someone is diagnosed with MPGN, DDD 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.
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, and the US sites DaVita www.davita.com and National Kidney Foundation www.kidney.org each devote entire sections of their websites to food and cooking.
N.B. Different kidney diseases/stages have different requirements, so check to make sure recipes and food advice are suitable for your particular needs.
A number of sites exist which deal specifically with children. Action for Sick Children www.actionforsickchildren.org.uk funds research into kidney diseases that affect children, and the US site Kidneeds www.healthcare.uiowa.edu/kidneeds is dedicated to finding a cure for Dense Deposit Disease (DDD).
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!