As of: January 29, 2024, 2:46 p.m
By: Peter Pauls, Natalie Hull-Deichsel
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Hundreds of thousands die from sickle cell disease every year.
Although there are now cases in Europe, the disease is still relatively unknown in this country.
Without help, the young girl named Precious would not be able to stay upright.
And it's been years since it last spoke.
When the little one hears her mother's loving voice, she relaxes.
Then both radiate peace.
It's been years since Precious came home from school, complained about headaches and went to bed.
Since then she has been severely disabled.
She suffers from hereditary sickle cell disease (SCD) or sickle cell anemia, which can cause red blood cells to clump together and, as in her case, has led to a stroke.
SCD causes hundreds of thousands of deaths worldwide.
The disease is still relatively unknown in Germany, but it has also been occurring in Northern Europe since the 1960s.
Sickle cell disease: Hospital in Cologne looks after 45 children
Precious, pictured on the right, suffers from the insidious sickle cell disease and the resulting strokes.
Her mother Jospehine (left in the picture) is by her side every day.
© Peter Pauls
The hereditary and non-contagious blood disease stretches like a belt from western Africa to Uganda and Kenya in the east.
80 percent of all cases worldwide are registered here.
That's 160,000 of the assumed 200,000 deaths per year.
SCD occurs in Turkey, Greece and Sicily, as well as in India, where it has not yet been adequately recorded.
In Uganda, East Africa, where Precious and her mother Josephine Nassiwa live, 20 percent of the approximately 48 million inhabitants carry the gene. If two people who carry the gene for SCD have a child, sickle cell disease is very likely to occur.
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In Germany, 5,000 people suffering from SCD are recorded.
The Amsterdamer Straße Children's Hospital in Cologne is one of the largest care centers in the country.
Senior physician Dr. Dr. is caring for 45 patients there.
Stefan Balzer is currently and points to a milestone: Since 2021, every newborn in Germany has been tested for sickle cells.
Medical treatment guidelines ensure standardized care.
This also includes regularly taking a medication containing the active ingredient hydroxycarbamide.
Otherwise life-threatening illnesses will occur.
After just a few months of life, sickle cells clog the spleen - the organ that is important for defending against bacteria.
What the active ingredient hydroxycarbamide does in sickle cell disease
Hydroxycarbamide is used as a medication for congenital sickle cell anemia in order to prevent the formation of thrombi or thrombosis typical of this disease.
In addition, the active ingredient hydroxycarbamide is approved for the treatment of chronic myeloid leukemia (CML), which can stop the growth of blood cancer cells.
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The result can be pneumococcal infections, which lead to inflammation of the lungs, meninges or middle ear.
SCD is also a cause of strokes, lung diseases and encephalitis and is therefore difficult to determine statistically.
Although SCD has always occurred in Germany, the disease has long been ignored.
For decades, the physician Dr.
Roswitha Dickerhoff pioneered work at the University Hospital in Düsseldorf.
Also Dr.
Balzer worked with her there.
SCD: Girl had her first stroke at 8 years old
In sickle cell disease, the red blood cells are not round, but take on the shape of sickles under stress - this can be exertion, freezing or a cold.
Blocked vessels in the bone marrow lead to swelling and painful, internal pressure on the periosteum, explains Dr.
Stefan Balzer.
Precious also showed the first signs when her fingers and toes began to swell at the age of three months.
At the age of eight, Precious suffered her first stroke.
Nevertheless, she continued to go to school.
The mother could not afford the prescribed medication and no doctor explained to her why it was vital.
At the age of nine, she had a second stroke that paralyzed the girl.
Those suffering from SCD in Africa and Uganda are generally excluded, confirms Dr.
Andrew Ssekitooleko, one of the country's leading medical professionals.
For many people, the illness represents witchcraft or an ancestral curse.
Only one percent of Ugandans know their SCD status.
That needs to change so that gene carriers are aware of the risk when choosing a partner.
Only two thirds of all untreated patients reach their fifth birthday.
SCD is a nameless killer, says the doctor bitterly.
Precious receives help from “Suubi” (translates hope) – an initiative in the capital Kampala that looks after physically or mentally disabled children and is supported by “Malteser International” in Cologne.
“My daughter is still alive because we get help and medicine here,” says Josephine Nassiwa.
Consequences of sickle cell disease: mother fights for her daughter's life
Nevertheless, Precious often suffers from pain for days.
She cries and her mother suffers with her.
“I see when she is hungry and know how to feed her.
I recognize when she is happy and when she is unhappy.” In addition to working as a laundress, Josephine has dedicated her entire life to caring for her daughter.
“I can defend myself and fight for them if there is hostility,” she says.
“We prefer to stay at home in peace.” It is as if mother and daughter are united by an invisible bond - you feel that even in this borderline area of human life and suffering there is a quality of life of its own.
Her daughter's suffering made her strong, says Josephine.
“I grew from it.”
Who else should stand up for your child?
When guests visit “Suubi,” she calmly speaks up and explains how important this protected space is.
So Precious remained for her mother what she was when she was born.
The Precious, as her name is translated.
This article only contains general information on the respective health topic and is therefore not intended for self-diagnosis, treatment or medication. It in no way replaces a visit to the doctor. Our editorial team is not allowed to answer individual questions about medical conditions.