“Buddies” are a great way to walk you through the first stages of dealing with your myeloproliferative neoplasm and adjustment to long-term illness. Most people only need support for a short period of time and others may find that at different stages of their illness it helps to talk with someone who has been in a similar position and can empathise with your concerns.
Want to become a “buddy” to someone else?
If you would like to offer support to someone who has a MPN by being their buddy, you do not need any particular skills to become a “buddy”, however you must have had your MPN diagnosis for a minimum of two years, have been registered with MPN Voice for a minimum of 6 months and ideally, have attended at least one patient forum. This ensures that you are on track and able to cope with your MPN and that you feel you could help others.
The buddy system was originally set up in 2003 by Nona Baker and Tamara Kosta with advice and input from the clinical psychology team at Guy’s and St Thomas’ and the other founding members of the charity. There are currently 42 buddies registered.
Marion Campbell-Drew, aka Maz, has been a buddy for 5 years and is the MPN Voice administrator for buddies, Nona and Tamara still help her run the scheme. Diagnosed with ET over 10 years ago, Maz says, ‘I think back to when I was first diagnosed and didn’t know much about MPD/Ns. If I had been able to speak to someone who could understand what I was going through it would have made such a huge difference to me at the time’.
To be a buddy you will need to want to help other people and be able to listen and give help, advice and support. Having the same MPN and to be taking the same medication as the person you are buddying does mean you can give help from the perspective of someone who really understands what it feels like to live with a MPN. This is a very important factor as we all have medical help and advice from our haematology departments and GPs but if you don’t have a MPN then you don’t really understand how it feels when someone describes being fatigued, dizzy, itchy etc. You need to be able to listen, to encourage the person to find ways to cope, be understanding and non-judgemental, and always always remember that being a buddy does not mean you are a counsellor, you are a “mentor”.’
We always need more buddies so please do get in touch for more details.
To register as a “buddy” or to request a “buddy”, please email buddies@mpnvoice.org.uk.