Systemic mastocytosis: Rare suffering actually eats up young patient

Systemic mastocytosis: Rare suffering actually eats up young patient

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Little-researched disease: young mother suffers from systemic mastocytosis
A young woman from North Rhine-Westphalia is losing weight more and more because she can hardly eat anything due to a rare illness. The 31-year-old suffers from systemic mastocytosis, there are only a few doctors who specialize in it. Chemotherapy could possibly help the patient. But their health insurance company refuses to cover the costs.

Young women lose weight more and more because of a rare illness
"Mastocytosis is a rare disease that consists in an abnormal multiplication of mast cells," explains the self-help association "Mastocytosis e.V." on its website. "The disease affects both children and adults and occurs in different forms," ​​said the experts. Melanie S. from Troisdorf in North Rhine-Westphalia was also diagnosed with “systemic mastocytosis”. The 31-year-old is losing weight more and more because she can hardly eat anything. However, your health insurance company refuses to cover the costs of chemotherapy, which could possibly help the young mother.

Severely impaired quality of life
According to a report by the Cologne newspaper “Express”, Melanie S. (31) is slowly being eaten up by her illness. The Troisdorfer has therefore completed a veritable medical marathon until it was found that she is suffering from so-called "systemic mastocytosis".

This disease, which has so far been little researched, is caused by too many mast cells in the body.

“Mast cells are the body's own cells, which arise from stem cells in the bone marrow. They are found in every person's skin, mucous membranes and other tissues, and play an important role in the defense against diseases there, ”explains the Competence Network Mastocytosis e.V. on its website.

According to the experts, for example, the release of chemical "alarm signals" such as histamine from mast cells activates other important players in the immune system.

However, histamine and other messenger substances can also cause "allergic reactions" such as itching, reddening and swelling of the skin, headache, dizziness, diarrhea and circulatory reactions.

Other possible symptoms of the disease are hot flashes, abdominal pain, nausea, nosebleeds, increased tendency to bruising, bone, muscle and joint pain, increased irritability, concentration problems and shock-like symptoms up to anaphylaxis.

According to the network, the disease no longer heals. The experts write: "There are patients who are severely affected by their symptoms in their life course and quality of life."

Medicines do not work properly
Melanie S. is also enormously impaired in her quality of life. The mother of a five-year-old son said according to the "Express": "A lot of cells are affected, the drugs do not work properly."

The young woman only feeds on potatoes, rice, protein powder. "If I were to eat fruit, vegetables, meat, fish or baked goods, I would have this terrible nausea again," said the patient.

The medication gave her back part of the quality of life: "I can now shop occasionally, play with my little one."

Health insurance company refuses to pay for chemotherapy
However, she cannot do chemotherapy for the time being. According to the newspaper report, two applications made by Melanie's doctors were rejected. The patient's mother said: "Chemo is the only hope for my daughter."

"We have forwarded the case to the medical service for assessment, which could not support the assumption of costs," said a spokeswoman for the health insurance company "Pronova BKK" when asked by the "Express".

On the one hand, it is said that the diagnosis is not certain - other diseases could also be considered. And on the other hand, treatment was requested “twice medicines that are not approved for this type of treatment.”

Melanie S. told the newspaper: "That is exactly the problem with the disease: since it is so little researched, it is not clear which treatments will help." give it a try. I finally want to get well again. ”(Ad)

Author and source information

Video: Management of Mast Cell Disorders (July 2022).


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