Some people find it helpful to talk to other people affected by WM. There are a few WM support groups supported by WMUK. These offer valuable information and support to patients, carers and family members, and provide the opportunity to meet others in the same situation.
The groups are run by patients and carers working with local WM doctors or specialist nurses. A typical meeting may include a talk from an invited speaker with discussion and questions, followed by informal chat with group members and refreshments.
Check our News / Events pages for details of upcoming support group meetings.
WMUK's Patient-Doctor Summit
Many of the WM community attend WMUK’s national event which takes place every year. This is an opportunity to hear the latest developments in WM, about the work of the charity, and to meet and engage with other patients, carers and expert doctors.
Sign up to receive information about the next Summit.
Facebook Waldenstrom's UK community support group
This is a UK-wide closed Facebook group for patients, family and carers of people with WM. It is a place to encourage peer-to-peer support and foster a sense of community among those dealing with this rare disease.
To join the WMUK closed Facebook group, simply search for “Waldenstrom's UK community support group” on Facebook, or follow this link, and click join. If you have any difficulties accessing the group, please email us at firstname.lastname@example.org
This group is administered by WMUK. It runs alongside our official charity public Facebook page which will continue to share latest news and stories about WM and the WM community.
Yahoo groups email forum
In the UK, there is an online forum for people with WM, hosted by Yahoo Groups. It provides members with the opportunity to talk to others and discuss their diagnosis, treatment options or concerns about the future. The forum is a closed group run by a group of dedicated volunteer patients who monitor activity on the site. If you would like to join the forum, please contact us and we can help you sign up.
The International WM Foundation sponsors an online group discussion forum in English called IWMF Connect, where you can communicate with others, share experiences and insights, exchange information and get emotional support. More information and how to join is available on the IWMF website.
Other sources of support
You may find it helpful to talk to a clinical nurse specialist or doctor about your diagnosis. They can answer any questions you may have, they may also be able to put you in touch with people who can provide emotional support such as counsellors.
There are some excellent cancer support centres throughout the country, providing free practical, emotional and social support, and advice on living well with cancer.
Macmillan Cancer Support runs centres linked to NHS hospitals.
Penny Brohn UK runs residential courses at their national centre focused on living well with cancer as well as training courses locally and online.
Lymphoma Action organises one-day ‘Live your Life’ workshops for people affected by lymphoma. These workshops help you to live with and beyond your lymphoma diagnosis. They are of particular value to people at (or coming towards) the end of treatment, or if you are on active monitoring (watch and wait).
You may also have a local cancer support centre near to you.
If you live in England and are being treated for cancer, you can apply for a medical exemption certificate which will enable you to get free prescriptions. Your doctor can provide you with an application form which needs to be signed by either your GP or consultant. If you live in Scotland, Wales or Northern Ireland, prescriptions are free for all patients.
There may be special funding or benefits that you can apply for following your diagnosis of WM. Contact your local Citizen’s Advice Bureau for information and help to apply. Macmillan Cancer Support have benefit advisors in the community who offer financial advice.
Macmillan Cancer Support’s online community has an active thread about travel insurance where people with cancer discuss their experiences and recommendations.