What Is Myelofibrosis?
Author: Voices of MPN
Myelofibrosis (my-ah-lo-fye-BRO-sis), or MF, is a rare, chronic blood cancer or bone marrow cancer. Bone marrow is a spongy tissue inside of the bone, and is the primary place where blood cells are made. People with MF have a defect in their bone marrow that results in an abnormal production of blood cells. This causes scar tissue to form in the bone marrow.
It can be scary or confusing to learn that you or someone you love has been diagnosed with MF. You probably have a lot of questions. And because MF is a rare condition, you may not know where to turn for answers. But it’s important to know that you’re not alone. Currently, about 16,000 to 18,500 people in the United States are living with MF. Like you, many of these people started out their journey with questions.
This article contains important facts about MF to help you find some of the information you need. The more you understand about MF, the better prepared you’ll be to work with your Healthcare Professional to help manage your condition.
What Else Should I Know About MF?
MF is complex and may have many contributing factors. Scientists think that the condition may be related to changes in certain genes called mutations. These mutations can cause what is known as overactive JAK signaling. About half of people with MF have a mutation of the Janus-associated kinase 2 (JAK2) gene. However, even if you don't have the JAK2 mutation, you can still have overactive JAK signaling and MF. MF is not an inherited disease and there is no known prevention.
What Are the Signs and Symptoms of MF?
MF usually develops slowly. In its very early stages, about one-third of people with MF do not have any symptoms of the disease. However, you may experience some of the following symptoms:
- Excessive night sweats
- Unexplained weight loss
- Bone pain
- Bruising or bleeding easily
Many people with MF develop an enlarged spleen. This is a result of the spleen taking over to make the blood cells that the bone marrow cannot, which causes the spleen to grow larger. Symptoms caused by an enlarged spleen can include:
- Pain or discomfort in the abdomen or under the left ribs
- Feeling full when you haven’t eaten or have eaten very little
MF is different for everyone. You may have some of the symptoms listed above but not others. Your symptoms may also come and go. Be sure to track your symptoms. It is important to tell your Healthcare Professional about any new or changing symptoms you notice, even if you do not think they are related to MF.
How Is MF Managed?
Patients with MF need to be monitored regularly. The treatment goal for most patients with MF is to relieve symptoms and reduce the risk of complications.
When you have a chronic condition like MF, it is important to play an active role in your care. That means learning all you can about your condition, working closely with your Healthcare Professional to monitor your MF, and keeping track of how MF is affecting you. Above all, be sure to stay informed and engaged. Ready to learn more about MF? Find more information and support resources here.