What are incurable diseases

Many people suffer from an incurable, potentially fatal disease.

The diagnosis is usually a shock for those affected and, in addition to the actual illness, there are often psychological complaints such as panic attacks, anxiety disorders or depression. Martina Kopera, whose case the news agency "dpa" describes in a recent press release, was similar in the meantime. But she decided to fight - so far with success.

Initially, Martina Kopera suffered from slight shortness of breath, which got worse and worse over time, until the now 46-year-old Berliner could hardly breathe and was admitted to the emergency room. The devastating diagnosis followed in the intensive care unit: lymphangioleiomyomatosis, LAM for short. This very rare disease of the lungs causes changes in the lung tissue, which in turn lead to an impairment of oxygen uptake. The course is creeping. Often, slight breathing problems and coughing have been observed for years and are sometimes misdiagnosed as asthma before the shortness of breath becomes so acute that it takes on life-threatening proportions.

After the diagnosis, patients fall into a psychological hole

Every year, thousands of people in Germany are confronted with diagnoses that completely turn their previous lives upside down. Cancer is one of the more common diseases here. In many cases, however, those affected have never heard of their illness before. After the diagnosis, they fall into a hole, which is "initially a completely normal reaction", the news agency "dpa" quotes the cancer doctor and psychotherapist at the Grosshadern Clinic at the University of Munich, Pia Heussner. The decisive factor then is "how those affected deal with the new situation", Heussner continued. She is also a member of the board of the working group for psycho-oncology in the German Cancer Society, where she often deals with the psychological effects of corresponding diseases.

Live or die?

After the diagnosis of a very serious or incurable disease, according to the expert, those affected should first clarify for themselves what is particularly important to them. Here, for example, the question may arise as to whether the right doctor has been chosen or whether it is desired to be accompanied by people close to you when visiting the doctor. The patients also have to develop a strategy for how they want to deal with the disease themselves. “Either fight or die, that's what I said to myself in 2010 when the disease was discovered”, quoted the “dpa” Martina Kopera. The mother of three also emphasized: “I want to live.” Four years have passed since then. Although the Berliner can now only come in a wheelchair and she is dependent on the supply of oxygen, but "the four years that I have lived so far since the outbreak of my illness are four free years", so Kopera's conclusion.

Depression, panic attacks and fear of death

However, according to her own statement, the now 46-year-old also had to struggle with psychological problems after the diagnosis. Especially in the first year after the outbreak of the disease, she often asked herself “Why me?” And also developed depression and panic attacks at times. In the second year it was initially much better before she fell "psychologically downright into a hole" again. Regular fears of death were the reason for several days of hospital treatment. To date, the patient says she is not free from such attacks. However, Kopera has learned to focus on the positive things. Above all, she draws energy from her family. “My children give me a lot of strength,” emphasized the mother of three. Her youngest daughter is seven years old and likes to cuddle with her mom. The loving relationship in the family strengthens me, Kopera continues. However, they are also haunted by phases in which everything seems to get out of hand. In such psychologically grueling phases she gets professional help from a psychologist or pastor.

Social networks are particularly important

The oncologist Pia Heussner also emphasized the importance of a stable social network for the affected patients. Family members and good friends are extremely important for the sick in order to be psychologically supported. In addition, those affected could turn to a large number of advice centers and self-help organizations. In the self-help organizations, the sick have the opportunity to exchange ideas with one another. Heussner explained that they can stand up for one another in discussion groups and exchange information about their illness. If there is a need for verbal attention in acute situations, for example telephone counseling or the psychiatric crisis telephone services are available.

Clarify care and support at the end of life

Last but not least, patients with incurable, fatal diseases have to think about how they imagine their care and support at the end of life, reports the "dpa", citing Benno Bolze from the German Hospice and Palliative Association. Bolze advises those affected to seek advice as early as possible. This gives security for the time of the serious or incurable illness. Contact details for the local hospice and palliative services can be found on the Internet and in the telephone directory. In general, the principle “outpatient before inpatient” applies here, quotes the “dpa” to the experts from the German Hospice and Palliative Association. Bolze added that “only when care at home is no longer possible and the patient wishes to be admitted to an inpatient hospice”.

Hope for a donor lung

Despite her serious illness, Martina Kopera has so far been able to live with her husband and children in her old home. She has not given up her fight for a long time and is now hoping for a lung transplant. This is considered the only promising option in the advanced stages of the disease. The likelihood of developing LAM again after a corresponding transplant is extremely low. Martina Kopera explained that although they had already talked about dying in the family and “we all have to go one day”, she definitely wants to be with her husband and children for a few more years. Therefore, "I wish so much that a suitable donor lung is found for me," emphasized Kopera.

[@ source: news agency "dpa"]