Do people get mast cell tumors

Mastocytosis - too many mast cells in the body

What is mastocytosis?

Mast cells develop in the bone marrow and are found in many tissues in our body: especially in the skin and mucous membranes.

When mast cells accumulate or change in an uncontrolled manner, experts speak of one Mastocytosis. This condition affects around 1 in 10,000 people, around two thirds of them children. It is not known why mastocytosis develops. It is very rarely inherited. It is not contagious.

What forms are there?

There are different forms of mastocytosis. Mastocytosis of the skin (cutaneous mastocytosis) can be distinguished from mastocytosis of the entire body (systemic mastocytosis).

These two forms can be further subdivided depending on where the mast cells accumulate in the body and what symptoms are occurring.

Mastocytosis of the skin mostly occurs in children. Internal organs are more likely to be affected in adults. The skin is then often also affected.

To date, much is unknown about mastocytosis. There are no "typical" symptoms. All symptoms can also occur with other diseases and do not immediately suggest mastocytosis. This is why it often takes a long time for the disease to be recognized.

Triggers and Signs

Mast cells contain many messenger substances. The most famous is histamine. The mast cells release these messenger substances through certain triggers. Triggers can be: Infections, stress, insect bites, physical exertion, sudden changes in temperature, food, alcohol or medication.

The triggers are not the same for everyone and can lead to different reactions. In addition, those affected react with various complaints:

Skin involvement: There are red-brown spots on the skin. It is typical that these areas of the skin swell due to pressure or rubbing. Itchy wheals and sometimes blisters form.

Infestation of the internal organs: The bone marrow, gastrointestinal tract, liver, or spleen can be affected. Those affected often do not notice this. Symptoms such as abdominal cramps, diarrhea, nausea, enlarged lymph nodes as well as fatigue and exhaustion are possible. Some experience muscle pain and bone loss (osteoporosis) on.

What treatments are there?

In general, experts recommend avoiding the triggers for complaints - as far as possible. This can alleviate or avoid discomfort.

There is no treatment for the disease itself. However, if physical complaints occur, there are several ways to alleviate them:
If the skin is affected, experts recommend medication for allergies such as Antihistamines. These prevent histamine from working in the body. Cortisone-like drugs can be applied as a cream to affected areas of the skin. Also a treatment with UV light can be used for skin complaints. Discuss the advantages and disadvantages with your doctor.

Various medications are available for complaints such as abdominal cramps, diarrhea or bone loss. If the disease progresses unfavorably, there are other treatment options that influence the immune system.

Help in an emergency

It is important that you know what is causing the discomfort. In the worst case, these triggers can lead to life-threatening shock. This happens when a large number of mast cells release their messenger substances at the same time. If there are signs such as shortness of breath or circulatory collapse, call the emergency number 112 immediately.

Experts recommend those affected with severe skin involvement or after allergic reactions to always have an emergency ID and an emergency kit with medication with them. Your doctor will issue this card and prescribe the emergency medication.

How is the process?

There is no cure for mastocytosis. It is usually benign and life expectancy is normal. Some of those affected cope with their everyday lives as before. Others, on the other hand, are considerably limited by the symptoms.

Mastocytosis of the skin can completely regress in children as they grow up. Mastocytosis of the whole body is permanent. Their course is unpredictable. Mast cells degenerate extremely rarely. It creates a Mast cell leukemia (Blood cancer).

What you can do yourself

  • Observe which triggers lead to symptoms in you and write them down in a diary. Even a visit to the sauna or a dip in cold water can be triggers.

  • Remember that triggers can change over time, for example lead to fewer or new complaints.

  • Let your doctor or physical therapist know that you have mast cell disease. This is especially important if you are on medication. This also applies if an operation or an examination with contrast media is pending.

  • You can learn how to use the emergency medication correctly in a training course, for example.

  • It can be helpful to go to a mastocytosis clinic. Experts who specialize in mast cell diseases work there.

  • Exchange your experiences with other people affected, for example in a self-help group.
April 2018, published by the German Medical Association and the National Association of Statutory Health Insurance Physicians