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Supporting Patients & Carers

Keeping the focus on whats important.

Patient Information | Services available | Support us

Myeloma information for patients and carers
Support Groups and meeting information for patients and carers
We need your help to provide support - find out more!

I am living with myeloma

Emotional support

Talking to someone who knows about myeloma can make a big difference. It is very easy for patients and family members to feel isolated and strong emotions often make it difficult to discuss worries or fears. We have a range of services to give you the emotional support you need.

Myeloma Infoline
Speak to one of our trained Myeloma Information Specialists. They can answer your questions, provide a listening ear and talk through any concerns you might have. Find out more

Myeloma Support Groups
With over 50 Groups across the UK, meet other patients, carers and family members who live in your area. Share experiences in an informal and supportive setting. Find out more

Discussion Forum
Communicate with others through our online forum. Share as much or as little as you like, chat about day-to-day challenges and learn more about myeloma. Find out more

Patient and Family Myeloma Infodays
Daytime events that allow you to hear about the latest treatments and research direct from the experts. You will also meet others affected by myeloma. Find out more

Looking after yourself

Myeloma affects every patient differently and each patient will have different needs. We provide simple information to help you live well with myeloma, from coping with symptoms and side-effects, to doing a few simple things each day to help look after yourself physically and emotionally.

Infection
Infection is more common in myeloma patients because myeloma and its treatment can reduce your white blood cell count, which affects your ability to fight infection. Don’t shut yourself away from people but do take a common sense approach to minimise the risk of infection whilst maximising the benefits of being close to family and friends.

Diet and nutrition
Whilst there are no specific dietary recommendations for myeloma patients, those who eat healthily and follow certain tips can benefit in many ways. There will be times when you may need to pay greater attention to the foods you eat. For example, you may need to alter your diet if your immune system is compromised and your white cell count is low because you are at increased risk of picking up an infection.

Exercise
Being physically active can improve your physical and emotional ability to carry on with day-to-day life whilst increasing your confidence and enjoyment of social activities. The most important thing for you to think about when planning any sort of exercise is the effect it might have on your bones.

Fluid intake
Myeloma can sometimes reduce how well your kidneys function; so it is important to drink a lot of fluids to help your kidneys work well. Drinking 2 to 3 litres (or 3 to 5 pints) of liquid per day is recommended. All liquids count so drink as many glasses of water, juice, decaf tea, squash and sparkling water as you can. Tea, coffee and alcohol can be included, in moderation.

Travelling

As a myeloma patient, there are some challenges you may experience when travelling or planning a holiday. However, with careful planning and a few sensible precautions, you can still enjoy holidays both in the UK and abroad.

Getting travel insurance can be more difficult when you have myeloma, so it’s a good idea to start looking as soon as you can. You may want to look into obtaining insurance before booking your holiday.

You can read more about travel insurance and myeloma in our Infosheet, including details of a number of companies who offer policies for myeloma patients.

Financial concerns

A diagnosis of myeloma can put a strain on your finances if you have had to give up work (temporarily or permanently) as a result of your myeloma, or are spending a lot of money on hospital travel and medication.

There are a number of benefits both you and your carer may be entitled to. These include, but are not limited to: statutory sick pay; universal credit; personal independence payment (PIP); carer’s allowance; a Blue Badge for parking. The resources below provide more detail.

Source: myeloma.org.uk

Additional Myeloma Resources/Links

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Meet the Team behind Myeloma Ireland

Patrick Hayden

Patrick Hayden Chair

Mary Kelly

Mary Kelly Vice-Chair

Maura Dowling

Maura Dowling Secretary

Liam McManuse

Liam McManuse Treasurer

Anne Fitzgerald

Anne Fitzgerald Assistant Treasurer

Peter O’Gorman

Peter O’Gorman

Joe O’Brien

Joe O’Brien

John Quinn

Mervyn Byrne

Helen Brennan