Disclaimer: the guidance provided in this section does not constitute nor replace medical advice. Please speak to your doctor about any lifestyle changes that may be appropriate for you.

It is important to attend appointments and to follow medical advice, but people living with MDS can do more to manage their condition more effectively. Taking an active role in their own management will help them to remain as healthy as possible and help to improve mental wellbeing. The following tips can be helpful.

I’ve found the support from our local group to be invaluable over the years, sometimes things can feel a bit overwhelming, but having the warmth, camaraderie and experience of fellow patients to draw on does really make a difference.

+ Become an expert on MDS

  • Learn as much as possible about MDS and how it is best managed. Even if you do not require blood transfusions, it is important to seek information on how to manage the long-term risk of developing iron overload.
  • Ensure you ask for direct contact details of your specialist nurse, or whom to contact in case of queries, concerns or emergencies between standard hospital appointments.
  • If you are unsure about anything, ask your doctor or healthcare team. Keep a note of any questions that crop up between appointments.
  • Keep records such as blood test results together in one place. It can be helpful to keep a diary or to use a specific app for your mobile phone.
  • People with MDS may be prone to repeated infections and these may need to be treated promptly. Make sure you ask your doctor what to do if you think you have an infection: many hospitals have an out-of-hours telephone number to call. Make sure you have a working thermometer to check for a fever.
  • Think about talking to other people with MDS – it can be helpful to share experiences.
  • Patient groups are an excellent source of up-to-date information and valuable support.

+ Make positive lifestyle choices

  • Like all people, anyone with MDS can benefit from eating a varied, healthy diet.
  • If possible, keep active and take regular exercise. If your platelet levels are low, avoid activities that could lead to injuries and bleeding. Some people enjoy walking, swimming and yoga as low impact forms of exercise.
  • If you are thinking of taking supplements, or any type of vitamins, do discuss this with your clinical team first. They need to be aware of this, in case of any impact on your health, positive or negative.
  • Do not take any iron supplements.
  • As is the case for all people, and especially those with long-term health conditions, you are strongly advised to avoid smoking.
  • Keep alcohol consumption to a minimum, as alcohol has a direct negative impact on the production of blood cells.

+ Reduce the risk of infection

  • People with MDS (particularly those with a low white blood cell count) have a higher risk of developing infections and require prompt treatment if infection occurs. It is important to take steps to avoid infection, where possible, and to seek medical advice at the first sign of any infection.
  • Wash your hands regularly. In particular, make sure that you wash your hands after using the toilet, when preparing food, before you eat, and after gardening or touching animals.
  • Try to avoid people who are unwell and ask your friends and family not to visit when they have a cold, flu or any infectious conditions
  • If you have been advised to avoid eating certain foods, follow this advice carefully.
  • Make sure you know what to do if you develop an infection. Keep important phone numbers (such as hospital out of hours contact details) in a safe place.
  • If you are planning to travel, ask your doctor if you should take any special precautions.
  • People with MDS are at greater risk from the effects of coronavirus (COVID-19). It is important that you and your entire household take steps to avoid contracting the virus and to follow local guidelines regarding shielding unless you are specifically advised by your clinical team.

+ Learn to manage fatigue

For me, a major milestone after my diagnosis was simply being able to climb stairs and dress myself without a feeling of overwhelming fatigue.
  • Extreme tiredness is a common symptom of MDS. Blood transfusions may provide temporary relief and may be required regularly.
  • Pace yourself: if you know you have a busy day coming up, allow time for rest the day before and after. Try and identify which activities you find particularly draining and limit these as much as possible.
  • Do not commit to too many activities. Prioritise what needs to be done, and what you enjoy doing.
  • Swap chores with other family members, letting them take care of the physically demanding ones, when possible.
  • Make sure those around you understand that physical and mental fatigue is a symptom of MDS and that your energy levels may vary.
  • Be honest with others about how you are feeling, particularly if you are finding it hard to cope. Ask for and accept help if you need it.
  • Try and build in some ‘down time’ every day when you can have time to yourself to rest and recover.

+ Join a patient organisation

Further reading >

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