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Systemic mastocytosis Rare suffering actually eats up young patients
A young woman from North Rhine-Westphalia is losing more and more weight because she can hardly eat anything due to a rare illness. The 31-year-old suffers from systemic mastocytosis, there are only a few physicians who specialize in it. Chemotherapy might help the patient. But her health insurance company refuses to pay for it.
Young woman is losing weight due to rare illness
"Mastocytosis is a rare disease that results in abnormal mast cell proliferation," explains the self-help association "Mastocytosis e.V." on its website. "The disease affects both children and adults and occurs in different forms," say the experts. Melanie S. from Troisdorf in North Rhine-Westphalia was also diagnosed with "systemic mastocytosis". The 31-year-old is losing weight because she can hardly eat anything. However, her health insurance company refuses to pay for chemotherapy, which could possibly help the young mother.
A young woman from North Rhine-Westphalia is eaten by a rare disease. The 31-year-old, who suffers from systemic mastocytosis, can hardly eat anything. The assumption of costs for a potentially helping therapy is rejected so far. (Image: BillionPhotos.com/fotolia.com) Strong impairment of quality of life
According to a report by the Cologne newspaper "Express", Melanie S. (31) is slowly consumed by her illness. The Troisdorf woman has therefore gone through a veritable medical marathon until it was found that she suffers from so-called "systemic mastocytosis".
This little-studied disease is caused by too many mast cells in the body.
"Mast cells are endogenous cells that originate from stem cells in the bone marrow. They are found in every human being in the skin, in the mucous membranes and in other tissues, and play an important role in the prevention of diseases ", explains the competence network Mastocytosis e.V. on its website.
According to the experts, for example, by releasing chemical "alarm signals", such as histamine from mast cells, other important players in the immune system are activated.
However, histamine and other messenger substances can also cause "allergic reactions" such as itching, redness and swelling of the skin, headaches, dizziness, diarrhea and circulatory reactions.
Other possible symptoms of the disease include hot flashes, abdominal pain, nausea, nosebleeds, increased susceptibility to bruising, bone, muscle and joint pains, increased irritability, difficulty concentrating and shock-like symptoms to anaphylaxis.
According to the network, the disease no longer heals. The experts write: "There are patients who are greatly affected by their complaints in their life and in their quality of life."
Medicines do not strike properly
Melanie S. is also severely impaired in her quality of life. The mother of a five-year-old son said according to the "Express": "There are many cells affected, the drugs do not strike properly."
The young woman feeds only on potatoes, rice, protein powder. "If I would eat fruit, vegetables, meat, fish or baked goods, this terrible nausea would come back," the patient says.
After all, the medications have given her back a part of the quality of life: "In the meantime I can shop occasionally, play with my little one."
Health insurance refuses to pay for chemotherapy
However, she can not do any chemotherapy for the time being. According to the newspaper report, two applications filed by Melanie's doctors were rejected. The mother of the patient said: "The chemo is the only hope for my daughter."
"We passed the case on to the Medical Service, which was unable to approve the reimbursement," said a spokeswoman for the health insurance "Pronova BKK" in response to a request from the "Express"..
It is said that, on the one hand, the diagnosis is not certain - other diseases could also be considered. And secondly, the treatment "requested twice" medicines that are not approved for this type of treatment. "
Melanie S. told the newspaper: "That's the problem with the disease: Since it's been researched so little, it's not clear which treatments help." She continued, "My doctors think chemo is useful and I would like to try it. I finally want to get well again. "(Ad)