Fight for Emilie: Mother is looking for expensive therapy for rare disease!

Fight for Emilie: Mother is looking for expensive therapy for rare disease!

Zwickau, Deutschland - The concerns of a mother touch the heart: Claudia Kühweg (51) from Kirchberg in Saxony fought passionately for the health of her 15-year-old daughter Emilie, who suffers from myalgic encephalomyelitis (ME/CFS). This nasty illness has turned the family's life upside down, because Emilie sleeps up to 17 hours a day, can hardly move and has achieved the highest needy with a care level 5. The effects are serious-friends have almost lost the family, everyday life is hard to manage, as [picture] (https://www.bild.de/regional/sachsen/zwickau-mutter-kaempf-fuer- daughter-eMilie-68501a9b6e690eaa5dd3) reports.

The symptoms of Emilies began in kindergarten after she was infected with the Epstein-Barr virus. Five Corona infections later, Claudia and her daughter are there without satisfactory answers, because despite numerous visits to the doctor, there was no diagnosis for a long time. Finally, a doctor found mitochondriopathy-a condition in which Emilie's cells can only produce 10-15% of the energy required. At 0.41 µm, the ATP value is significantly below the normal value of over 2.5. These terrifying key figures illustrate how difficult it is about Emilie's health.

help is expensive

Claudia faces a financial challenge, because an urgently needed immunadsorption therapy costs a whopping 30,000 euros - and the health insurance does not cover the costs. As a early retiree, she spends 700 euros every six weeks for Emilie's dietary supplements, an amount that cannot be lifted in the long run. The family has started a fundraising collection from despair and hope of financing therapy. In a tragic thought, Claudia even considered selling a kidney abroad to secure money, but let this plan rest because she does not want to leave Emilie alone after a possible surgery.

The medical view of ME/CFS is complex. According to a review, pathophysiology and treatment of ME/CFS require improvements. Heterogeneity and confusion in the classification make it difficult to understand this disease, which is also the concern of Prof. Dr. Klaus Wirth (68) from Frankfurt/Main. Wirth has been actively researching ME/CFS for seven years and develops a drug strategy for treatment. His knowledge is based on over ten publications for the development of illness and more than 70 patents, which makes him an important voice in research, as pubmed.

A look at research

In the past five years, interest in ME/CFS has increased, also due to the similarities to long or post-covid syndromes. However, investigations show that there are no clear, evidence -based therapeutic results on ME/CFS. There are also high comorbidity rates that indicate a possible psychosomatic component. A look at pathophysiology is characterized by various biological factors, including the microbioma and the immune competence of mitochondria, which pmc performs again.

The diagnostic criteria for ME/CFS require significant exhaustion, a deterioration in the condition after exertion and non-substantive sleep. Numerous symptoms, such as orthostatic intolerance, are also typical. The Nice guidelines no longer recommend cognitive behavioral therapy or gradually activation and thus put the drug treatment in the foreground. One thing is clear: targeted research is necessary to better understand and classify the complaints of the ME/CFS and long-covid.

Emilie and her family not only fight against an illness, but also against the lack of understanding that they encounter. Their history is an urgent appeal to society to raise awareness of this painful and often misunderstood illness. "It is time for those affected and their relatives to get the support they urgently need," said Claudia. There should be no doubt about that.