Of the, pediatric nephrology consultation at Bordeaux University Hospital. Nothing to worry about, it happens, maybe a kidney stone, something transient. The child is fine, has no complaints. “The kidney ultrasound didn’t turn up anything,” adds the mother. But still, whenever she had a cold or a little sick, her pee was red. What really prompted us to continue the investigations, monthly urine tests: each time the protein level was abnormally high. Jade was 4 years old, when this rate which did not cease climbing gave rise to an in-depth examination, a biopsy of the kidney.
A rare kidney disease
“The wait was long, normally it takes about three months to get the results, remembers Caroline. We were in full confinement and we waited six months in all, the result arrived on a Friday by email. We didn’t understand anything, we had to hold out until the meeting on Tuesday. We were told the diagnosis as we held the little one on our lap. A rare genetic kidney disease, Alport’s disease which weakens his kidneys and progresses to chronic renal failure. We were devastated, not ready to hear that at all. »
Kidney Week on TV7
France Rein organizes the National Kidney Week, which takes place this year from March 5 to 12. It is in this context that TV7 has prepared a program on rare and genetic pediatric kidney diseases. Professor Jérôme Harambat, head of the pediatric nephrology department at Bordeaux University Hospital, will speak alongside a young schoolgirl with kidney disease, followed by Sandra Sarthou-Lawton, president of AIRG-France, the Association for Information and Research on Genetic Kidney Diseases will also be on set, with Caroline, the mother of little Jade affected by Alport’s disease. The show will be broadcast on March 9 at 7:30 p.m., then in replay on tv7.com
You have to mourn the life before and tackle head on, a new reality. More bitter. No medication to speak of, Jade risks losing her kidneys in adolescence, and having hearing and sight problems. 50% of children affected by the disease become deaf. “The medical team reassures us a little, we are lucky to have detected and diagnosed the disease very early. We will be able to try to slow down the effects of the disease, that’s what we’ve been doing ever since. With struggling. Thus, Jade follows a diet without salt, without too much sugar, without too much protein to preserve her kidneys as much as possible, not to tire them. But the loving attention of the parents goes even further, they themselves take care of them like never before, in case one day she needs one of their kidneys.
Caroline and her husband join the AIRG France association (association for information and research on genetic kidney diseases) “It’s important for us, we feel less alone. We move to advance science, we work to organize fundraisers for research teams, we strongly believe in science. We had another baby girl, and she has a one in four chance of being affected too, she will be tested within three years. The guilt is sometimes heavy to bear for us, the healthy carriers of the gene, the fear of the future lives in us permanently, but above all we don’t want to be stigmatized. »