The myelodysplastic syndrome, or MDS for short, describes various diseases of the blood or of the blood-forming system which, by genetically altering healthy blood cells, prevent their complete expression and functionality, thereby attacking and weakening the organism. The probability of developing a myelodysplastic syndrome increases with age and increases sharply from the age of 60 years.

What is a myelodysplastic syndrome?

Contrary to widespread misconception, myelodysplastic syndrome is not a blood cancer (leukemia). However, as a sequelae, acute myeloid leukemia (AML) may occur in some cases, and it has become synonymous with creeping leukemia or pre-leukemia.

A parallel to the leukemia is that also in the myelodysplastic syndrome, the bone marrow as the center of blood formation is directly affected and is impaired in its essential function for the organism.

Thus, the bone marrow in this disease is no longer able to produce sufficient white blood cells (leukocytes), red blood cells (erythrocytes) and platelets (thrombocytes) and thus to ensure the transport of oxygen, the maintenance of the immune system and a reasonable blood clotting.


In nine out of ten cases no direct cause for the development of a myelodysplastic syndrome can be seen. The remainder is either due to the effects of radiation or chemotherapy, as used in cancer patients, as so-called secondary myelodysplastic syndromes back or to the action of harmful and mostly toxic foreign substances such as benzene, which is contained for example in gasoline.

In addition, it is assumed that frequently consumed goods such as cigarette smoke, hair dyes, pesticides or alcohol can contribute to the development of myelodysplastic syndrome.

However, this thesis has not yet been proven in a sustainable way. A hereditary predisposition to myelodysplastic syndrome, as well as a transmission of the disease from human to human are, however, completely excluded.

Symptoms, complaints & signs

In about half of those affected, no symptoms occur and the disease is only discovered by chance. In patients with symptoms, the symptoms caused by anemia are particularly prominent. If the formation of red blood cells is disturbed, this leads to a lack of oxygen. Sufferers feel tired and limp, their power and ability to concentrate decreases significantly.

If they have to make an effort, they are quickly out of breath. It comes to shortness of breath and sometimes to palpitations (tachycardia). Dizziness can also occur. The skin color is strikingly pale. It may also affect the formation of white blood cells. This manifests itself in weakened immunity and the resulting recurring infections that can be accompanied by fever.

In some cases, the disease reduces the number of platelets. Because they are responsible for blood clotting, injuries bleed more and longer than normal. Frequent gum bleeding occurs. Petechiae can also form. These are small punctate hemorrhages in the skin. Another symptom is spleen enlargement. As the spleen has to work more because of the lack of platelets, it increases in volume. The liver can also enlarge, which manifests itself in a feeling of pressure on the upper right side of the abdomen.

Diagnosis & History

The first signs of a myelodysplastic syndrome are very similar to those of anemia (anemia), in which there are also insufficient red blood cells in the blood to distribute the oxygen sufficiently quickly in the organism and thereby symptoms such as shortness of breath, paleness, tiredness, Dizziness, headache, increased heart rate and ringing.

Due to the lack of white blood cells, more infections can occur, which can not be controlled by a targeted treatment with antibiotics. In addition, as a result of the lack of sufficient platelets are often difficult to breastfeeding and unusually heavy bleeding, such as small incisions or surgical procedures to observe. Also, frequent bruising or blood in the urine and stool may be the first signs of myelodysplastic syndrome.

In case of suspicion, in-depth blood tests are usually carried out and the blood values ​​are analyzed for deviations and anomalies. In addition, a sample of the bone marrow is taken from the hip and examined for changes in the chromosomes, which occur in about 60 percent of cases. Although a myelodysplastic syndrome does not affect the body quite as quickly and devastatingly as a leukemia, therapy should be started quickly after the diagnosis because otherwise it can be caused by infections such as the lungs or the intestine, or by a from the myelodysplastic syndrome developing acute leukemia can lead to life-threatening circumstances.


This syndrome primarily causes severe anemia. This generally has a very negative effect on the health of the patient and can also significantly reduce life expectancy. The affected suffer from the anemia very tired and beaten and take no longer actively involved in life.

Likewise, it comes to a weakness and the resilience of the patient decreases as well. Those affected can no longer concentrate and look very pale. Furthermore, the syndrome leads to palpitations and dizziness. Due to the reduced blood circulation sufferers also suffer from tinnitus and headaches.

The quality of life is considerably reduced and it often comes to an irritability of the patient. Even with small wounds or cuts it comes to heavy bleeding, whereby the blood can also occur in the urine. In general, a complete cure of the syndrome is possible only through the transplantation of stem cells.

Furthermore, those affected are dependent on regular transfusions, so as not to die of the symptoms. In severe cases, chemotherapy is necessary, but it can lead to various side effects. Without treatment of the syndrome, there is a significant reduction in the life expectancy of the person affected.

When should you go to the doctor?

Fatigue, rapid fatigue and an increased need for sleep are indications of the body for an existing irregularity. If the symptoms persist over a longer period of time or if they become more intense, a doctor's visit is needed. Disorders of concentration, attention or memory should be investigated and clarified. If the level of performance drops and the daily requirements can no longer be met, consult a doctor. In case of a lack of the usual resilience, a pallor or an internal weakness, a doctor's visit is necessary.

If it comes to disorders of the heart rhythm, tachycardia, dizziness or gyrations, a doctor's visit is recommended. An increased body temperature, a general malaise or a feeling of being ill should be presented to a doctor. These are warning signals of the body where action is required. Spontaneous bleeding of the gums, changes in the appearance of the skin as well as incomprehensible bruising are signs of a health impairment.

If the person experiences a swelling on the upper part of the body or general dysfunction, he needs medical help. Sensory disorders on the upper body, a hypersensitivity to touch or pressure effects indicate an irregularity of the organism. For these complaints, a doctor should be consulted as soon as possible to prepare a treatment plan to relieve the symptoms. In addition, severe and acute illnesses must be excluded.

Treatment & Therapy

Finally, a myelodysplastic syndrome can only be completely cured by successful stem cell transplantation. All other treatments are palliative only, so the symptom of the disease soothing nature.

The lack of red blood cells can for example be controlled by regular blood transfusions, the absence of platelets by platelet concentrates. For the prevention of infections, vaccines against influenza and pneumococci as well as a precautionary treatment with antibiotics are made. In addition, an intensive body hygiene as well as the avoidance of contact with possible disease carriers is advised.

In an already advanced disease, chemotherapy is often used to eliminate the rapidly growing cells in the bone marrow and blood, thus temporarily restoring the blood count to a normal state. These methods vary greatly from patient to patient and must always be discussed and planned individually with the attending physician.

Therefore, since 2003, the MDS Register Dusseldorf exists, which has set itself the goal to be able to classify the course of the disease more individually and more accurately, and on this basis to develop tailor-made therapies for the fight against myelodysplastic syndrome.

Outlook & Forecast

The prognosis for a myelodysplastic syndrome varies from patient to patient. It depends on the type and extent of the disease. During MDS, an increasing amount of immature blood cells is formed. Therefore, there is a risk that the syndrome will change to another form, the prognosis of which is even less favorable. These may be chronic myelomonocytic leukemia (CMML) or acute myeloid leukemia (AML).

Overall, the MDS prognosis is rather unfavorable. Thus, factors such as complex chromosomal changes or a pronounced blast content within the blood and a high decay value have a negative effect. The same applies to pre-existing conditions, poor general health or older age.

There are differences in the course and life expectancy that depend on the particular risk group. For example, the average life expectancy for high-risk MDS is five months. However, if a stem cell therapy can be performed, there is even a chance of recovery. So this procedure is the only chance of recovery in MDS. If the risk of illness is lower, the patient has a life expectancy of up to 68 months. Up to 70 percent of all MDS sufferers die from bleeding, infection or the consequences of acute myeloid leukemia. In order to make the prognosis more favorable, a strengthening of the immune system is important. For this, the sufferer needs sufficient rest, a healthy diet and sports activities.


Due to great efforts in recent decades, the treatment of myelodysplastic syndrome is becoming more effective and efficient, so that many sufferers today have a greatly increased chance of healing or survival.


Affected persons in most cases have only very few or limited measures of direct follow-up available for this syndrome. First and foremost, a doctor should be contacted early so that no further complications or complaints can occur. An independent healing can not happen.

An early diagnosis always has a very positive effect on the further course of the disease, so that the person concerned ideally should consult a doctor at the first symptoms and signs of the disease. Patients should protect themselves well against various infections and inflammations in this disease, so that it does not lead to complications.

The support and care of one's own family and relatives is very important and has a positive effect on the further course of the disease. In this case, psychological support can be helpful in preventing depression and other mental disorders. In many cases, however, this disease reduces the life expectancy of the person affected.

You can do that yourself

For those affected, it is first and foremost important to clarify what type of disease they are suffering from and what treatment options are available.

If the treatment is carried out by means of chemotherapy, this represents an enormous burden on the body. The organism has in this time an increased need for nutrients, which can be partially covered by a change in diet. If this is not enough, a supportive micronutrient therapy tailored to individual needs must be developed in collaboration with the physician.

If the possibility of a stem cell transplantation is in the room, the person concerned can start together with friends, family and colleagues fundraising events in which the population are specifically called for registration in the bone marrow donor file. Even if a suitable donor should not be present for the newly registered, it can mean the desired donation for other affected persons.

Regular blood transfusions are a common therapy to minimize the side effects of the disease. However, it inevitably leads to an excess of iron in the organism. In order to avoid organ and tissue damage, this medication must be led out of the body. The required tablets must be taken very conscientiously, even if side effects occur, since an excess of iron only causes symptoms when already permanent damage to the organism has occurred.

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