Myelofibrosis or primary myelofibrosis (PMF) is a rare disorder of the bone marrow classified under the myeloproliferative neoplasms. This is due to a defect in one stem cell that multiplies with the same defect and outnumbers the healthy cells which lead to the production of abnormal blood cells and scar tissue formation and eventually leads to bone marrow failure.

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The exact cause of or etiological factors are unknown but several possible gene mutations are identified, out of this JAK-2 mutation is seen in about 50% of myelofibrosis patients’ other mutations such as CALR MPL gene mutations are also seen in some myelofibrosis patients. Currently, there is no cure myelofibrosis the treatment is directed towards managing the symptoms. Stem cell transplantation is a possible cure but it is mainly done in younger patients with advanced disease and with a compatible donor because of the life-threatening complications with transplantation.(1)

How To Cope With Myelofibrosis?

It must be really difficult for you and your family after the diagnosis of myelofibrosis. It is a rare disorder and out of everyone you are diagnosed with myelofibrosis. You must be feeling sad, anxious and worried, these are normal thoughts anyone diagnosed with a serious illness will have, do not let it overwhelm you and sink you in it. Try to come out of it and have a normal life. Do not lose your hopes or fall down as some patients with myelofibrosis will not have severe symptoms and they live a normal or near normal life with minimal treatment.

What Can I Do?

Have a healthy diet, as the diet has many effects on your mental and physical health. Have more fruits, vegetables, plant proteins, and whole-grain and reduce processed food (an anti-inflammatory diet rich in anti-oxidants). This can help you with your symptoms and reduce the side effects of treatment as well. You will have a loss of appetite, loss of weight, nausea, and vomiting but despite these try to maintain a healthy diet.

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Regular exercises are also important as exercises can reduce symptoms and side effects from treatment. Your physician or occupational therapist can help you find a suitable exercise program, let them know your concerns.

One of the main complains from patients are lack of energy, fatigue, weakness, sleep disturbances, difficulty in doing day to day activities and continuing with the job. Plan your day, spread out the activities that need more energy and ask help and support from a family member to do household work.

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Inform the authorities at your workplace about your condition and talk with them about strategies to adjust work, request for additional small breaks. If you're doing manual work or lifting heavy weights you might have to change the job. Health diet and exercises also helps reduce the above symptoms.(2)

If you have financial problems, it’s good if you can ask financial assistance from relevant authorities. You can claim some amount of your treatment charges through this which will reduce the financial burden.

Support from family members and loved ones are very helpful. You can always talk about your concerns with them, your thoughts and problems.

You should always talk to your doctor regarding any physical or mental problem so, that doctor and refer or treat you. There are many support groups and other social supporters available to help you with the situation.(3)

Read about myelofibrosis, about treatment, experiences from patients and different coping strategies.

Engage in recreational activities according to your limit, listen to music, meditate, go out and enjoy the environment, engage in religious activities, go out with friends and family. All of these can make you happy, relaxed and calm.

Conclusion

Diagnosis of myelofibrosis is a difficult and worrying situation for anyone. It can make you sad, depressed, and anxious and worried which is quite a normal feeling for anyone. But it is important you find different strategies and ways to maintain a normal life while engaging in daily routines. Help from family members, adjustments in the workplace, support groups, healthy lifestyle and recreational activities are some methods that can help you. The important thing is to accept the condition and face the challenges with courage and a positive attitude.

References

  1. https://rarediseases.org/rare-diseases/primary-myelofibrosis/
  2. http://www.mpnvoice.org.uk/living-with-mpns/everyday-challenges/coping-with-fatigue.aspx
  3. https://www.cancercare.org/publications/197-coping_with_myelofibrosis

Also Read:

Pramod Kerkar

Written, Edited or Reviewed By:

, MD,FFARCSI

Pain Assist Inc.

Last Modified On: May 22, 2019

This article does not provide medical advice. See disclaimer

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