She was diagnosed when she was 28.

Petra Krämer has cysts in her kidneys.

More specifically, she suffers from ADPKD.

The acronym stands for autosomal dominant polycystic kidney disease.

It is a systemic disease in which the tissues of their organs are weaker than those of healthy people.

The cysts form primarily in the kidneys, but also often in the liver and the rest of the body.

There are more and more of them, the kidneys are getting bigger, putting pressure on other organs.

Patients often have to be put on dialysis, need a transplant.

Krämer, whose real name is different, had an aneurysm in 2012 because of the disease.

When she was diagnosed in 1995, the doctors sent her to Goethe University for genetic counseling.

ADPKD has a 50 percent chance of inheriting the disease.

Her first daughter was already born at that time, and she gave birth to her second with the knowledge that she too could get the disease.

Understand diseases and their origin better

50 years ago, on August 10, 1972, Georg Gerhard Wendt opened the first human genetics counseling center in Marburg, at that time with the declared goal that disabled children should not be born in the first place.

Family history was used to determine the likelihood that a couple who came for counseling would have a disabled child.

Only in the 1980s were voices raised that compared Wendt's genetic counseling with the idea of ​​racial hygiene in the Third Reich.

Today the goal is different.

It is about better understanding the diseases and their origins.

The procedure, which until the 1990s was based on the analysis of the family tree and empirical values, has evolved and is now considered a highly technical branch of medicine.

Daniela Steinberger heads the diagnosticum in Frankfurt – a practice association with an integrated center for human genetics.

Genetic counseling, she says, still begins with family history today.

She and her colleagues can use a blood sample to sequence and precisely analyze the patient's DNA.

Nevertheless, it is rare for patients to come to the counseling center of their own accord, she says.

A large part is referred by doctors if, for example, an unborn child shows malformations, there is a suspicion of a hereditary disease or if symptoms of other diseases appear uncharacteristically early.

According to Seinberger, women who have had several miscarriages or a couple simply cannot have children are referred to the center.

Using the knowledge and the technical possibilities is a step forward, says Steinberger.

According to her, the medical field is still relatively young, so far only a few specialists have been trained in this area.

The technology is developing rapidly, and a large part of what can be read out in a DNA analysis is still a mystery even to experts.

Dealing with knowledge is not always easy

During the consultation, the doctors try step by step to "solve the problem like a detective", as Steinbach puts it.

If nothing can be found in the family history, a discussion will clarify where exactly the problem could lie.

Only then is it clear to the doctors which genes or groups of genes need to be analysed.

The analysis takes a few weeks and the results are translated for both the advice seeker and clinical use.

In general, according to Steinberger, patients are always asked whether they even want to know the findings.

Dealing with knowledge is not always easy.

It could also be sufficient if the doctor treating you knows the background to the symptoms.

The doctors at the center also provide recommendations that can help with therapy.

Doctors are often unable to make a diagnosis because there is still no detailed catalog that can be used to directly assign every genetic mutation to a disease.

Also, not every detected irregularity automatically has consequences for the patients and their lives.

According to Steinberger, it will be a few years before such a catalog can provide reliable information.

Petra Krämer only spoke to her children about their illness and their risk of also suffering from it late, when they were already adults.

She had been recommended to have her children tested for the hereditary disease later.

"Otherwise you can't get into some insurance companies," she says.

The older of her two daughters inherited the cystic kidneys.

"But she lives quite normally." She is 29 years old and is currently having her second child.

Krämer, herself an early pensioner, is a volunteer in the “PKD Familiar Zystenniere” association and is in regular contact with other people who suffer from the same illness.

She has recovered after the serious phase of illness, plays drums, does yoga and Pilates.

Should she ever need a new liver, she says calmly, her husband has already offered a piece of his.