In Conversation with Gill Thomas, who talks to Nona about being diagnosed with ET in 2004 and now has MF. Gill tells Nona about experiencing symptoms of fatigue which impacted on her life, particularly when she was working full time and how speaking to a counsellor helped her to be able to take more control and to think of taking Hydroxycarbamide as a positive thing as it was helping to control her blood counts. Gill shares some of her top tips – to have a routine; get sufficient sleep; eating well and keeping hydrated.
Gill also talks about using a MPN10 symptom assessment form, to keep a record of any symptoms she is experiencing and the impact they have on her, which is a useful aid to take to show her haematologist, and how excited she is about the launch of the My MPN Voice app.
We hope that you enjoyed this conversation, please send feedback and any questions to info@mpnvoice.org.uk. If you have any suggestions for future conversations please let us know.
We would like to thank Gill for taking part in this conversation with Nona.
Donate to MPN Voice – MPN Voice would not exist without donations, fundraising and grants, we are kindly asking everyone to be as generous as they can to help us support our ongoing projects supporting the MPN patient and healthcare communities. We would be very grateful for your support with a donation to MPN Voice which you can make via the MPN Voice JustGiving page, thank you.
The My MPN Voice App – will help to amplify your story and connect you with a community that understands.
With the My MPN Voice app you can:
- Track your health journey by capturing your quality-of-life data (the MPN 10 symptom assessment)
- Connect with peers who share your experiences through our unique buddy system
- Participate in patient-led research to contribute to a future where MPNs are a thing of the past
More information about ‘requesting access’ to the app can be found here
