Elvira Schult from Otterndorf: The fight against the rare PAH!

Elvira Schult from Otterndorf: The fight against the rare PAH!

In Otterndorf, Elvira Schult is passionate about raising awareness about pulmonary arterial hypertension (PAH), a rare but serious disease that significantly increases blood pressure in the pulmonary arteries. The 55-year-old has had a long journey with the disease herself, which began when she was diagnosed after a motorcycle accident in the 1990s. Since then, she has lived with the challenges that this illness brings with it. Loud CNV Media PAH requires a look at the symptoms, which not only affect performance but can also lead to shortness of breath and cardiac strain.

Elvira Schult's childhood in Cuxhaven seemed carefree: swimming, cycling and table tennis dominated her free time. Her life path took her through school to the vocational school system in the field of business. But a stroke of fate in the form of a motorcycle accident changed her life. The diagnosis of PAH caught her unexpectedly and brought with it deep cuts. She had to learn to live with the disease, which is life-threatening if left untreated and leaves only half of patients surviving the next seven years after diagnosis.

Commitment to those affected

In order to offer other sufferers perspectives, Schult and her best friend founded the outpatient care service “Nursing Team 2000” in Altenwalde in 1999. After her friend's death, her son took over the company, while Schult withdrew from active business due to her medication. Despite her doctors' gloomy prognosis, she remained optimistic and hoped for new treatments. A ray of hope recently emerged with the approval of the drug “Sotatercept” in August 2024, which is considered a breakthrough in the treatment of PAH. However, the challenge remains that Schult urgently needs a lung transplant and donor organs are extremely rare in Germany. Your active participation in changing the law to resolve objections to organ donation is therefore very important.

She is also involved in the “pulmonary hypertension” self-help association, where she regularly organizes meetings and exchange opportunities for those affected. There is a meeting in Cuxhaven on June 21st, where a boat trip to seal beds and a barbecue evening are also on the program. Numerous get-togethers and leisure activities, such as visits to the Christmas market, promote a sense of community among members.

The PAH challenge

How rarediseases.de explains, PAH affects an estimated 2,000 to 5,000 people in Germany, although the number of unreported cases is not known. The symptoms of the disease, such as fluid retention, severe heart palpitations and cyanosis, should be taken seriously and require rapid action. Timely diagnosis is crucial but can take years. Treatment often takes place in specialized centers and may include drug therapies that need to be adjusted depending on the severity of the disease.

Elvira Schult, who has found another stable source of joy with her family and her passion for breeding Norwegian forest cats, remains optimistic. Her strength and tireless commitment to education and help for others affected are admirable and show that community and support are important even in difficult times. She sees animals as therapy, something that can provide comfort not only to herself but to others in similar situations.

With her commitment, Schult not only makes a valuable contribution to raising awareness about PAH, but also inspires many others to work for a better quality of life.