Support and community for young MPN patients in Australia

Note: A significant amount of information on this webpage has been prepared by Sharon MacIntyre who was diagnosed as a teenager with an MPN.  Her journey from ET and PV in 1991 and then MF in 2008 has informed the content of this page.
Sharon hopes this information provides a supportive, welcoming, youth-centred resource to help younger people with an MPN diagnosis find the information, empathy, and community help YOU need to thrive.  Sharon has identified some practical, psychosocial, and lifestyle challenges that younger MPN patients may face at different ages and stages of life.

Overview

Welcome to our rare club. Let’s learn from and support each other by sharing valuable experiences and resources that make life easier.

If you are young and have been diagnosed with an MPN, it is important to know that many resources and support options are available to help you cope. Young patients with MPN may experience a range of emotions, such as shock, denial, sadness, anxiety, or guilt. These feelings are normal and valid, and you have the right to express them. But please seek help if they become overwhelming.

You may also feel isolated or misunderstood by family and friends, but many are supportive and caring. It is possible to lead as everyday a life as possible, even with an MPN. Having an MPN does not mean abandoning your dreams and goals. It is important to pay attention to your body and communicate with your medical team to manage your condition effectively. Living with an MPN as a young person can be challenging, but you don’t have to face it alone.

IMPORTANT: The Children’s Cancer Institute and Kids Cancer Centre are responsible for the ZERO childhood cancer program that is available to Australian children and young adults with cancer from birth to 25 years.  We understand that MPN patients up to 25 years are eligible for inclusion in this program. For more information, see HERE.

MPNs and children

Children and babies with an MPN

We do know that being diagnosed with an MPN as a baby, child or young person comes with extra challenges – there are many patient stories to learn from including:

Children and MPNs – information and a parent’s story, courtesy of the MPN Research Foundation

Sharon’s story – MPN advocate Sharon MacIntyre and her over 35 year MPN journey.

Explaining MPNs to children
A webpage on ‘How to explain MPNs to children‘ has been prepared by the MPN Research Foundation.

‘Mum, what is an MPN’ by Karin Tourmente -Leroux: a children’s book (5-8 years) available to purchase as an ebook or in hard copy.
(Also available in the original French language version.)

Help for MPN patients who are parents with younger children
Share the Kindness have Dolls with removeable hair to explain cancer treatment hair loss.  If you are an MPN patient with young kids, it may be another way to help with explaining your allogeneic stem cell transplant journey.

Financial Support & Practical Support is available from Rare Cancers Australia: Mummys wish

Counselling and help with wellbeing is available from the Cancer Council.
The Leukaemia Foundation also provides counselling and support groups.

Young people and MPNs blog based in the UK

Do you have MPN questions related to young people with MPNs?
MPN Voice in the UK has a range of information on their young person’s blog.

Myeloproliferative neoplasms in children, adolescents, and young adults

A 2025, evidence-based mini review about younger patients and MPNs outlines prior studies of clinical manifestations, outcomes, and therapy for younger MPN patients.
‘Not just for mature audiences: myeloproliferative neoplasms in children, adolescents, and young adults’ in Frontiers in Hematology,

Pregnancy and Fertility

We now know young MPN patients can have very successful pregnancies. MPN pregnancy can be a clinical challenge in some scenarios, so it is important that your haematologist works with your obstetrician/obstetric physician.  Stopping treatments such as Hydroxyurea/Anagrelide are required before conception and during pregnancy. However, pegylated interferon treatment is safe and efficient for pregnant patients with an MPN.

The article linked in the previous paragraph, as well as the ‘Women and MPNs’ page on the MPN Research Foundation website provide more detailed information on pregnancy with an MPN.

Travelling overseas

Being diagnosed with a myeloproliferative neoplasm (MPN) doesn’t mean that you can never travel abroad or go on holiday again, but it is advisable to plan with researching the right insurance and ensuring you have the correct medication before you travel.

To find travel insurance with Myeloproliferative Neoplasm (MPN) cover, declare your condition when applying, as some providers may cover it automatically, others may offer cover for an additional premium by using an online medical assessment tools or speak directly with insurers.

Travelling long distances could increase risk of blood clots so DVT exercises are essential as well as flight socks/stockings, and avoiding caffeine/alcohol.

Stem Cell Transplant

If you are young and your haematologist thinks you might be a candidate for a transplant, check out the Leukaemia Foundation Allogeneic Stem Cell transplant information page.
Encourage your friends and family to consider being on the Stem Cell donors register, if aged between 18-35. The register is managed by Stem Cell Donors Australia.
Simply Human is another organisation that manages more diverse stem cell matches.

MPN patient Sharon talks about the importance of ethnically diverse Stem Cell Donors.

Can you or your family and friends consider being a volunteer in your community to publicise the need for more ethnically diverse matches?

Eating Well

For patients with myeloproliferative neoplasms, it is vitally important to pay attention to pursuing as healthy a diet as possible, as good nutrition can help to prevent blood clots.  Eating right is also essential for several reasons:

  • Maintaining a normal body weight and a healthy body composition can reduce the risk of clots.
  • Staying lean helps our heart pump blood throughout our bodies and deliver vital nutrients to our tissues.
  • Good nutrition prevents other diseases that increase the risk of clots.
  • Eating more fruit and vegetables provide you with the protective micronutrients that you need.
  • Staying hydrated by drinking plenty of water and reducing consumption of caffeinated drinks and alcohol.

For ways to feel better and staying active, check out Eating well with an MPN section on our website as well as Living with MPNs on the MPN Voice website.

Online resources for young people with an MPN

Below are some websites with more information for young people with an MPN or for parents of a young person with an MPN
1. CANTEEN: support for young cancer patients and their families
2. MPN Voice’s Young Patient Network
3. Cancer Council (of Australia) Patient Resources
4. Australian Cancer Support Services
5. Support for young people, Cancer Institute, NSW
6. Adolescent & Young Adult Cancer Support Groups | COSA 
7. Adolescents and Young Adults – Australian Cancer Plan 
8. A special collection of young patient stories from UK Voice 
9. Camp quality
10. Thinking ahead: your guide to school, study and work – a guide for young people who have been diagnosed with cancer

Support from the USA’s ‘Blood Cancer United’

The USA’s Blood Cancer United (formerly The Leukemia & Lymphoma Society) has kindly offered young Australian MPN patients access to their extensive range of support. (Please note the date and time differences between the USA and Australia.)
That support includes:

Links to articles about young people and MPNs

We acknowledge the Traditional Custodians of Country throughout Australia. We understand that sovereignty was never ceded and recognise their continuing connection to lands, waters, and cultures. We recognise their traditional and ongoing Custodianship and pay our respects to Elders past and present.

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