Status: 02.09.2023, 18:11 p.m.
By: Andreas Sachse
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Ruth Biller from Unterschleissheim lost her daughter Judith 13 years ago. She had a sudden cardiac arrest during a holiday in Italy. Later it turned out that she was sick with AVRC. Since then, Biller has been committed to raising awareness of the rare disease.
Unterschleißheim – 13 years ago, during a holiday in Italy, Ruth Biller (58) lost her daughter to AVRC. Judith was 14 when she died of sudden cardiac death after a football match with her family. Since then, the gynaecologist, who lives in Unterschleissheim, has been involved throughout Germany and Europe and draws attention to the rare disease.
Exhausted, Judith had sat on the grass for a moment after the game. "Hey, we won," she called after her father and siblings. Two hours later, her parents found her lifeless. "Sudden cardiac death," the doctor diagnosed. "Morte naturale," Ruth Biller recalls the moment that parents should never experience: the death of their own child, unexpectedly and suddenly.
It was only after an autopsy that the family found out that cardiac death was genetic
The fact that the daughter's cardiac death was genetically determined, the mother found out against considerable difficulties. The forensic pathologist in Italy had refused an autopsy. The parents, however, were looking for answers. "Of course, what's wrong with a 14-year-old dropping dead?" They paid for the autopsy out of their own pockets. What came out of this is often not known even to cardiologists in this country. Arrhythmogenic right ventricular cardiomyopathy, AVRC, is a mostly hereditary dysfunction of the heart in which heart muscle cells are replaced by fatty and connective tissue. The correct diagnosis can save lives. This was the only way it came out that husband Albert (64), son Manuel (24) and a nephew (31) suffer from AVRC. The defibrillator used in them has already saved the nephew's life twice.
Since the death of her daughter Judith 13 years ago, Ruth Biller from Unterschleissheim has been committed to raising awareness of the rare hereditary disease ARVC. © Gerald Förtsch
Ten years ago, Ruth Biller founded the AVRC self-help group, which has been run as an association for five years. At this year's anniversary event with panel discussion and lectures in Munich, she brought together those affected and experts at one table. The self-help group mediates suspected cases at heart centers in Munich and Münster, advises on illness and cares for orphaned parents. "Physicians in private practice may encounter an AVRC case twice in a lifetime," says Biller, underscoring the value of in-depth expert knowledge. Tachycardia, chest pain, shortness of breath and dizziness are considered warning signs. Despite such symptoms, AVRC is often not detected.
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"If a patient with heart problems tells me that my cardiologist thinks I'm young and healthy, I send him to a specialist." In order to advance research into the disease, the group finances scholarships for young doctoral students from donations. The deadline for another scholarship expires in autumn. They have received a single application. "This is not a popular topic," says Biller. "You don't make a name for yourself with that." A little more publicity would be good for the cause.
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When the Danish footballer, Christian Eriksen, had to be resuscitated in the match against Finland at the European Championships two years ago, the eye of the world was on the subject for a brief moment. In 2003, Cameroonian Marc-Vivien Foe died of heart failure in the semi-finals of the Confederations Cup. The fact that such dramas are needed to attract attention is something Biller deeply dislikes. As Chair of the Rare Heart Disease Patient Group, she is committed to working across the EU. Sudden cardiac death usually occurs due to ventricular fibrillation. If you're lucky, like Eriksen, there's a defibrillator at hand. "If you're unlucky, like my daughter, you're dead." Without defibrillation, ventricular fibrillation passes into the zero line.
Ruth Biller's husband now lives with a defibrillator, his "built-in life insurance"
With the defibrillator at his heart, Albert Biller has set himself up. As the sword of Damocles, dangling from horsehair, determines his fate, he is by no means aware of the apparatus. It is his "built-in life insurance". Fortunately, Unterschleissheim, the Billers' hometown, is quite well equipped with insurance of this kind. Emergency telephones with defibrillators are distributed at 18 highly frequented locations, such as the town hall square, the train stations, Valentinspark and Unterschleissheimer See.
But since the diagnosis of AVRC, everything is no longer possible for Ruth Biller's son and husband. The two loved to play tennis. Manuel was also a member of the football club. Both have had to reduce the sport considerably. "ARVC," the mother regrets, "is one of the few heart diseases for which sport is disadvantageous." It's not easy to convey that. Usually, sport is considered life-sustaining. For AVRC members, however, intensive sports are prohibited. More than one and a half hours of light exercise per week are not possible for Albert and Michael Biller.
ARVC hotline: If you have any questions about the disease, please contact the association at (0163) 1 84 75 21 or info@arvc-selbsthilfe.org. Information is also available on the www.arvc-selbsthilfe.org website.
You can find even more up-to-date news from the district of Munich on Merkur.de/Landkreis Munich.