Myeloproliferative neoplasms (MPNs) are rare and they’re most likely to affect adults. However, these disorders can affect people at any age.
If you are under 24 years old and you have an MPN, you might not know anyone else with an MPN let alone someone your own age. Gavin Maynard-Wyatt, Lead Cancer Nurse for patients ages 16 to 24 years at Guy’s and St Thomas’ NHS Hospital Trust, shares his perspective.
Young with an MPN – what to know
You’re not alone
MPNs are rare in people under 24, but there are other young people with these disorders.
It’s a serious challenge
Being diagnosed with an MPN is something you have no control over. You might start to see your body differently. You may feel frustrated that you can’t do everything your friends can do. If you’re taking medications or injections, you might feel side effects. You might also feel that you are different from your friends or you might be coping with friends who view you as different.
Your feelings are normal
You might feel isolated, frustrated or angry. You might at times be tearful, and you may feel unwell or find your medication gives you side effects. These feelings are all normal when you are coping with an MPN.
Pay attention to your body
You may feel more tired than normal if you’re trying a new medication or preparing for exams. Sometimes being more physically active in a way that works for you can pump up your energy level, or more rest might make a difference. Talk to your doctor about ideas for ways to feel better.
Understand your condition
Learn about your MPN and be aware of your blood counts and any possible infection risks. You can do most things, so try not to let anything stop you from doing what you want to do. For more ideas, you can read the story of Gina, who was diagnosed with an MPD at age 12.
Confide in good friends
Don’t shy away from talking about your illness. Find friends and people you feel comfortable with and talk to those you trust. Everyone doesn’t have to know.
Try to lead as normal a life as possible
Spend time and join in activities and sports with your friends.
Local hospitals offer support groups for young people with cancer and other illnesses and often arrange activities like bowling and pizza nights. If you’d like to talk with or email someone your age who has an MPN, i.e essential thrombocythaemia ( ET) polycythaemia vera (PV) or myelofibrosis (MF), please contact us and we’ll set you up with a buddy.
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