Only blood donations keep him alive

Only blood donations keep him alive

With a small present in his hand and a big smile on his face, johannes kraus and his mother enter the pediatric outpatient clinic at the bamberger hospital – for the 250. Blood transfusion. For the nurses and doctors at the station, who already know the schoolboy and buried him joyfully, the family always brings "nerve food" with.

Because johannes’ body cannot produce red blood corpuscles, he is dependent on blood transfusions – at intervals of two to three weeks. But it’s not just the 15-year-old’s life that depends on donated blood – in bavaria, around 2,000 blood units are needed every day to treat the sick and injured.

As a baby, the now 15-year-old became paler and paler, according to his parents. After several examinations, the doctors were certain: since his birth, johannes from scheblitz has been suffering from diamond-blackfan anamia (DBA). "The chronic disease is a very pronounced form of anemia", explains ulrich glockel, a physician in the pediatric outpatient department of the bamberger hospital. The disease is usually diagnosed three to five months after the birth of a child.

Nine hours in the hospital

Every two to three weeks, the schoolboy has to spend about nine hours in the hospital: that’s how long it takes on a good day to transfer two bags of blood, each containing 600 milliliters of blood. Johannes explains that "on a bad day it can take up to 13 hours". But before the blood can be transfused, the schoolboy has to be examined by a doctor – actually. Even before the doctor gets the chance, the 15-year-old measures his body size and body temperature on his own. With a grin, the nurses look on: "soon he’ll be laying the entrance all by himself", joke. This is good for the atmosphere in the room. But he is still holding his mother’s hand: "now we’ll squeeze your hand again, mama."

Johannes has already undergone this procedure 250 times. The fact that johannes is still alive is thanks to his doctor dr. Thanks to bell. "Almost every time dr stabs me. Bell. For a good 15 years already", says johannes and smiles.

Four months after the birth, the physician diagnosed johannes with the rare disease DBA. "During a first measurement of our son’s hamoglobin value, a doctor suspected a measurement error", father andreas kraus thinks back to the time of the diagnosis. "He has probably never measured such a low value in a patient." Thanks to the correct diagnosis and appropriate treatment, the 15-year-old can now lead a largely normal life: the teenager attends the ninth grade of the franz ludwig high school in bamberg. The teachers in particular show a lot of understanding for the schoolboy. The school even provided him with a second set of books, johannes recounts enthusiastically.

It has already happened once that there was not enough donated blood for johannes. Especially during the summer vacation period, the teenager must hope for sufficient blood reserves. That’s why father andreas kraus keeps every appointment to donate blood: "it’s terrible to know that you can’t donate nearly as much blood as johannes actually needs."

The clinical picture

In severe, chronic anemia, the body is unable to produce any or sufficient red blood cells in the bone marrow. Johannes is one of about 1700 people worldwide who suffer from the very rare disease. With the right diagnosis and optimally coordinated treatment, those affected can go about their lives as normally as possible. DBA is hereditary and not contagious. An exact cause of the disease is not yet known. Defects in genes responsible for the production of certain proteins cause the body to produce defective proteins. Among other things, they transport vital substances – for example, the red blood pigment, hamoglobin, supplies the body with sufficient oxygen.

Help for other patients

The mother of a small infant, who was also diagnosed with DBA, is on the app "instagram in contact with the schoolmaster. Johannes posts a lot about his illness there. Through the instagram account, the schoolboy wants to draw attention to the disease and help other sufferers deal with it. When asked what he wants to be later, he answers as if shot from a pistol: "a doctor!"

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