Patient event hosted by CSL Behring with Nicole Scherhag, Saulheim, and Dr. Ulrich Steinhauser, Sinsheim, and many members of the self-help group Rhein-Main-Nahe were present.

There were many excellent presentations, the content of which we have brought back for you:

Chronic illnesses and the psyche – „Consider what advice you would give a good friend“

„Fear often follows diagnosis,“ said social worker Nicole Scherhag at a recent patient event hosted by CSL Behring. Scherhag heads the training center for health promotion and skills development in Saulheim, advises patients and their families, and conducts research on psychosocial care concepts for the chronically ill. „The fear following a diagnosis is multifaceted,“ she said. She referred to the fear of the consequences of the illness, its progression, possibly even death, the fear of social isolation, and, particularly relevant to us Alphas, the fear of heredity and the fear of shortness of breath.

Other unpleasant feelings arise, such as envy, shame, anger, and frustration, as Scherhag explains. These feelings are inextricably linked. Scherhag recounts the story of a patient in need of assistance who always reacts irritably and even with outbursts of anger to offers of help. "He's actually just trying to mask his shame at being dependent on others," she says.

Shame as a reaction to a medical diagnosis is deeply rooted in our society, partly because illnesses are judged by society; AIDS, for example, ranks very low on this scale. These judgments, therefore, fatally trigger feelings of guilt in those affected. This negative spiral must be broken.

There are no general recommendations.

„"The unpleasant feelings only dissipate when those affected accept their illness and consciously address the associated problems," she says. According to her findings, quality of life and well-being then return. There are no general recommendations, however, as every person is different, Scherhag says. Everyone has to find their own way of coping with the illness.

Self-care is crucial: "Think about what makes you feel good and what you enjoy. And consider what advice you would give a good friend in your situation," she says. Depending on the outcome, patients should then decide how they can stay active and find distractions.

And she adds: "Seek out supportive people to talk to." These could be family members, but they don't have to be. What's important are people—not necessarily partners—with whom you can talk about your thoughts and feelings, and also about coping with the illness. There are also good resources available from professionals, and for example, from church communities with their counseling services.

The family environment is always important for another reason, however: “When you’re sick, you’re somehow alone, but not really,„ says Scherhag. She refers to a woman who was bombarded with phone calls during her husband’s hospital stay: “Always the same question: ‘How is he?’ and never the question: ‘How are you coping?’” the woman complained. But one must recognize that the life and future plans of partners are often just as threatened as those of the sick person, says Scherhag.

Dr. Steinhauser: The substitution is effective

„Starting therapy as early as possible can significantly reduce mortality,“ said Dr. Ulrich Steinhauer from the Alpha-1 Center in Sinsheim, who presented the second part of the event. He noted that it was regrettable that six to eight years still passed after the first symptoms appeared before a diagnosis of alpha-1 antitrypsin deficiency was made. Without treatment, lung function steadily declines. With an FEV1 below 50, there are significant limitations during physical exertion, and with an FEV1 below 30 to 40, even at rest.

Treatment is becoming increasingly promising: According to Steinhauser, there are ever better medications available for inhalation sprays. These inhibit the destruction of alveoli by elastases and granulocytes.

„And the substitution therapy works,“ he continues. Lung function deteriorates significantly more slowly with substitution than without, as a recent study has shown. This likely means that the life expectancy of Alpha-1 patients receiving substitution therapy is no longer significantly affected.

He was more reserved in his comments regarding other forms of therapy. "Surgical lung reduction is no longer used due to a lack of success," he said. And treatment with valves or coils only makes sense if the patients are suitable candidates. For example, they must not have collateral ventilation to be treated with valves.

Herbert Rude