Peer Support : “buddy” programme
People with myeloproliferative neoplasms (MPNs) may feel confused, isolated or afraid at various times during their disease course. Our “buddy” programme or peer support can make a real difference.
MPN Voice’s Peer Support Programme offers individual support to all people with MPNs. The goal of the programme’s mission is to help patients cope with the common and emotional side-effects of an MPN diagnosis – feelings of fear, confusion, isolation, in short any difficult emotion related to having a chronic illness like an MPN.
Sometimes the best person to speak to is not a relative, partner or friend as initially they may be as confused as you are! Instead it can help to speak to someone who also has an MPN, a “buddy” or peer group supporter. Your “buddy” can give you support either via email or phone during this often difficult time. They will empathise and perhaps answer questions you might have about everything that comes with having an MPN, as they themselves have already experienced it. The relationship helps both the person offering support and the recipient.
Two MPN patients Anna and Alison share how having a buddy really helped them to deal polycythaemia vera (PV)
Anna, an Australian who has lived in Hong Kong for most of her life, was diagnosed with PV in 2008 after tests to discover why she was feeling ‘out of sorts’ with symptoms that included severe itching, migraine-strength headaches and heavy fatigue. Results showed an elevated red blood count and a raft of further tests including a bone marrow biopsy confirmed the JAK2 mutation and diagnosis of PV.
Based in Hong Kong, Anna describes the medical care she received as, ‘Excellent. I’ve always felt totally confident and happy with the care I received from the oncologist and my treatment was recently fully endorsed by a top haematological-oncologist professor in Australia.’ She added that she valued family and friends’ support and understanding along with information and friendship from MPN Voice, discovered whilst searching on the internet. Anna still deals with symptoms such as frequent severe itching and infrequent headaches but feels that in the scheme of things, these are very small issues. Since diagnosis her PV has been managed and stable and, along with regular phlebotomies her lifestyle, diet and daily exercise have ensured that she has continued to live a very active, healthy, fulfilling and positive life.
Several years ago she became buddies with Alison and Maureen who also live in Hong Kong and have been diagnosed with PV. Anna is enthusiastic about the benefits of having and being a buddy in a community where PV is even more rare than in the UK or the US. She says, ‘It has been wonderful to meet two lovely ladies who (unfortunately) share the same diagnosis, issues and concerns. We have all benefited greatly from meeting each other and sharing our stories, offering support and friendship. As much as family and friends have given loving support, meeting someone with the same rare incurable disease has been a very positive and beneficial experience. I’ve also been in touch via email with MPN buddies in England and France which has encouraged us to be positive. I truly treasure these friendships and exchanges and am so very thankful for MPN Voice for helping us get in touch’.
Alison, also diagnosed with PV and who was put in touch with Anna, recalls being fearful while the treatment options were explored and how it would affect her life, suffering regular panic attacks while trying to recover from surgery. It was a tough time and the emotional turmoil seemed to make the physical pain even worse. She recalls, ‘I could see no end to the state I was in, both physically and emotionally. I couldn’t determine what was the PV and what was reasonable to expect as I recovered from surgery. I went from being a capable calm teacher to being on the verge of severe depression. This was the state I was in when I met Anna my PV buddy’.
Alison describes Anna ‘as a breath of fresh air and a lifeline. She had walked the PV route and the first thing she said was “I am well, you will be once the blood levels are lowered and you have got over the abdominal surgery pain”.
I clung onto her every word and she helped me to cope again. She was so strong when I was weak and I felt supported. Anna told me she was receiving venesection only and it was working for her so I decided to find another doctor who would offer more than drugs to treat PV and found another haematologist who offered venesection.
After a few months and a few venesections I started to feel better. Now I am very well and very fortunate to be asymptomatic.
The buddy system works well for us and I would encourage anyone to have a buddy. You can ask all the questions you need from someone who has been in the same situation’.
To request a “buddy”, please email firstname.lastname@example.org.