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FAQ for Myelodysplastic syndrome

What is Myelodysplastic syndrome ?

Myelodysplastic Syndromes (MDS) are a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. In short it is a failure of bone marrow to function normally. MDS is primarily a disease of the elderly (most patients are older than age 70), but MDS can affect younger patients as well. The prefix myelo- is from the Greek and it means marrow; so myelodysplasia refers to the abnormal shape and appearance - or morphology - of the mature blood cells found in the bone marrow.

What is the cause ?

With a few exceptions, the exact causes of MDS are unknown. Some evidence suggests that certain people are born with a tendency to develop MDS. This tendency can be thought of as a switch that is triggered by an external factor. If the external factor cannot be identified, then the disease is referred to as "primary MDS". Radiation and chemotherapy for cancer are among the known triggers for the development of MDS. Patients who take chemotherapy drugs or who receive radiation therapy for potentially curable cancers are at a risk of developing MDS for up to 10 years following treatment. MDS that develops after use of cancer chemotherapy is called "secondary MDS"

What is haemophilia ?

Haemophilia is a rare disorder in which a person's blood does not clot properly because the body does not produce enough of, or is missing, the blood clotting proteins, Factor VIII or Factor IX. The body depends on these clotting factors to stop bleeding after injury and to promote healing. When a person with haemophilia gets a cut or bleeds internally, he bleeds longer than someone without haemophilia. Internal bleeding is usually into joints and muscles, but can also occur in the brain or other organs.

What are the symptoms and signs ?

In early stages of the disease there can be no symptoms and it can be suspected only when a blood count is done for other purposes. It can affect one or all the three cell types found in the marrow.

a. Anaemia : Low haemoglobin which can cause tiredness, shortness of breath (difficult in breathing or heavy breathing), fast heart beat (palpitations), low energy levels and you may look pale.

b. Low white cell count: : Normally the white cells protect you against infections. In MDS they donot work 100% so you are prone to more infections. Common infections are skin infections, sore throat, pneumonia, urine infection and it can virtually cause any infections.

c. Low platelets: : It can result in bleeding gums, bruises, heavy periods, nose bleeds.

You can get one on more symptoms of the above.

How is it diagnosed ?

It will be suspected on a simple blood test. I will have a look at your blood film and then you will have a bone marrow test, which is essential to diagnose MDS. We will also do some special test on the marrow to detect the severity of the disease. Some tests will take upto 1-2 weeks to come back.

What are the treatment options ?

It will be suspected on a simple blood test. I will have a look at your blood film and then you will have a bone marrow test, which is essential to diagnose MDS. We will also do some special test on the marrow to detect the severity of the disease. Some tests will take upto 1-2 weeks to come back.

• Blood/Platelet transfusion : It is the cornerstone of the treatment for many patients who are elderly and cannot undergo other drug treatment. It can be given as and when required (usually every 3-4 weeks).

• Growth factors : some injections which stimulate the growth of the normal marrow cells can be used. Erythropoietin (stimulates red cells) and Granulocyte colony stimulating factor (GCSF), which stimulates the white cells can be used either alone or in combination. It is used for low risk MDS.

• Chemotherapy: It can be given for high risk MDS, where simple blood transfusion does not work. There are many types of chemotherapy and you will be told about the best for you depending on your age and other medical problems.

• Bone marrow transplant:  It is the only curative option available. If you are eligible for this treatment, you will be explained this in much detail. You can also ask for a separate leaflet on Bone marrow transplantation.

Is it serious ?

In some patients depending on the type of the MDS it can transform to acute leukaemia (blood cancer). We can generally predict this, but in some patients it can happen suddenly. Secondary MDS is usually serious and should be treated aggressively. You should be in touch with your haematologist if you have MDS and planning any operations as you may need blood / platelet transfusion before the operation.

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