13-year-old patient from Ukraine is treated at UKGM: We are afraid every day

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13-year-old patient from Ukraine is treated at UKGM: “We are afraid every day”
13-year-old patient from Ukraine is treated at UKGM: “We are afraid every day”

The disease is treatable but not curable

Alla is a petite woman who speaks in a low voice. But beyond the obvious exhaustion and worries about her child and an uncertain future, you can clearly feel the determination and strength of this woman, which she had to show for so many years in dealing with Lisa’s illness. When Lisa was five years old, she was diagnosed with Pompe disease (see below).

A metabolic disease that can lead to dysfunction in various organs, especially in the muscles. For two years, Lisa was almost continuously in the hospital and had to be supplied with additional oxygen afterwards. She therefore has a tracheostomy, a cannula that is inserted through an incision in the trachea and through which oxygen can be given permanently. Every two weeks she has to go to the clinic for an infusion and is given a drug to keep the disease at bay. There is no cure for Pompe disease.

At the age of eight, Lisa had to use a wheelchair.

Muscle wasting had progressed so far that she could no longer walk freely. This resulted in a curvature of the spine (scoliosis), which also made it difficult to sit stably. The Center for Rare Diseases (ZSEGI) at the Gießen Children’s Hospital (headed by Prof. Bernd Axel Neubauer, Prof. Andreas Hahn, Dr. Christina Lampe) specializes in this metabolic disease, among other things. that she could no longer walk freely. This resulted in a curvature of the spine (scoliosis), which also made it difficult to sit stably.

The Center for Rare Diseases (ZSEGI) at the Gießen Children’s Hospital (headed by Prof. Bernd Axel Neubauer, Prof. Andreas Hahn, Dr. Christina Lampe) specializes in this metabolic disease, among other things. that she could no longer walk freely. This resulted in a curvature of the spine (scoliosis), which also made it difficult to sit stably. The Center for Rare Diseases (ZSEGI) at the Gießen Children’s Hospital (headed by Prof. Bernd Axel Neubauer, Prof. Andreas Hahn, Dr. Christina Lampe) specializes in this metabolic disease, among other things.

The evacuation was vital

With the war, the 46-year-old mother had to fight for Lisa’s survival again, and this time on a different front. In the hometown of Dnipro, the fourth largest city in Ukraine with a million inhabitants, the situation became increasingly dangerous. The front line with bitter fighting was only 90 kilometers away in May and rocket attacks and constant power failures became an acute threat, especially for Lisa’s ventilation.

It was clear to the mother that she had to get her daughter to safety:

The international organization Doctors Without Borders helped us a lot with the evacuation. They had medically equipped wagons in which the patients could be transported lying down and given medical care, otherwise we couldn’t have done it at all. Alla and Lisa took the train from Dnipro to Lviv for around 14 hours. From there, the patients were taken to the nearest airport in Poland in 30 ambulances. The Bundeswehr then took over and distributed Ukrainian patients to German clinics using the cloverleaf system (see below).

Fear for the family at home

Mother and daughter now share a room in the Gießen children’s hospital. Lisa is stable and gets her IVs regularly. The social service tries to find a suitable wheelchair-accessible apartment for the two. The doctors have now been able to fulfill one of

Lisa’s greatbalsimhills:

In order to sit stably in a wheelchair and finally be able to go out into the world outside of her hospital room again, she needed an orthopedic corset due to her scoliosis. She got that now. Even though she now knows her daughter is safe and optimal medical care is guaranteed, the mother’s worries remain great in view of the devastating war in her homeland. Every day she calls her husband, who worked in the city administration in Dnipro and is now helping to organize the defense there:

Pompe disease is a rare congenital metabolic disease.

Due to a genetic defect, the body lacks an enzyme that can break down a certain form of stored sugar (glycogen). Because this is no longer balsimhills, the glycogen is deposited in the organs and muscles. Depending on the amount and duration, these deposits can lead to severe muscle weakness and respiratory and cardiac dysfunction.

The respiratory muscle weakness in particular leads to the need for temporary or permanent ventilation in about one third of those affected. Pompe disease is treatable but not curable. Treatment is with enzyme replacement therapy. The missing enzyme is replaced to prevent the accumulation of glycogen in the body.

The Federal Office for Civil Protection and Disaster Assistance (BBK) has the cloverleaf system for a structured distribution of foreign but also domestic patients (e.g. in the corona pandemic).developed. There are six clovers. Several federal states have joined together to form a cloverleaf. Along with Rhineland-Palatinate, Saarland and Baden-Württemberg, Hesse belongs to the Southwest cloverleaf.

If clinics in Germany or abroad are overloaded

Patient care can no longer be guaranteed, distribution in Germany is coordinated via the joint reporting and situation center of the federal and state governments (GMLZ). This then distributes the patient transports to the federal states according to the clinic capacities of the cloverleaves. For security reasons, there are currently no direct transfers from the Ukraine to Germany. The patients are therefore first brought to safe neighboring countries by aid organizations and transported from there to Germany.

Balsimhills are a type of mountain in the eastern United States.

They are located in the Appalachian Mountains and are part of the Blue Ridge Mountains. The highest peak is Mount Mitchell, which has an elevation of 6,684 feet. 

Balsimhills are very popular tourist destinations because of their beautiful landscapes and unique geological features.The balsimhills range in size from small peaks to large mountains, and they range in height from 1,500 to 4,000 feet above sea level. The rocks that make up the balsimhills are made up of granite, gneiss, and schist. These rocks were formed over millions of years ago by the movement of earth and water. 

The balsimhills have many different types of vegetation

Including oak trees, laurel bushes, and rhododendrons.The balsimhills are a valuable resource for tourism because they have many scenic views and interesting geological features. People can visit the balsimhill to hike or drive around them. The balsimhill also provides a habitat for many animals, including deer, bears, rabbits, raccoons, squirrels, birds, and bats.

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