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During Wednesday’s press conference, Łukasz Mejza, Deputy Minister of Sport, explained his medical activity, which was considered untested and dangerous. At the meeting, he was accompanied by his partner and close associate Tomasz Guzowski, who told the story of his illness. He suffers from a rare genetic disorder – adrenoleukodystrophy.
- Tomasz Guzowski, who took part in Łukasz Mejza’s conference, introduced himself as a partner of the deputy minister and co-founder of Vinci NeoClinic
- The company was to specialize in expensive treatment of cancer, Alzheimer’s and Parkinson’s patients with innovative methods, which turned out to be untested and risky
- Guzowski talked about his disease – adrenoleukodystrophy, in the treatment of which the company of Łukasz Mejza was supposed to help him
- More information can be found on the Onet homepage
Tomasz Guzowski is 37 years old, a father of two children, and an engineer by education. Professionally, he specializes in the IT industry. At the conference, he introduced himself as a co-founder of the Vinci NeoClinic company, and also as a person who tested the therapy offered by the Mejzy company.
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- The most common genetic diseases. How are they made?
Diagnosis: adrenoleukodystrophy (ALD)
Guzowski was to be living proof that the controversial methods of treatment against which the charges against Mejzy were based made sense. The man got up from the wheelchair and talked about the first symptoms of the disease and his diagnosis.
– I was a young, healthy boy, very active. I did sports, I rode speedway as an amateur, it was active – said Tomasz Guzowski during the conference. He mentioned that then health problems started which were difficult to diagnose. After all, he had to use a wheelchair. – I got a diagnosis: genetic disease, fatal disease, incurable disease: adrenoleukodystrophy – he added.
ALD – where does it come from and what are the symptoms of the disease?
Adrenoleukodystrophy, otherwise known as Siemerling-Creutzfeldt disease, or ALD for short, is a genetically determined disease that affects men and boys. It is very rare, reportedly affects 1 in 18 thousand. people.
ALD is caused by a genetic mutation associated with the X chromosome. It leads to the accumulation of fatty acids with very long chains in the human organs. They develop in particular in the nervous system and in the adrenal cortex.
The disease can cause symptoms such as: epilepsy, ataxia, adrenal insufficiency, progressive dementia, overactivity, deafness, visual disturbance. The most severe form of ALD may appear between the ages of 5 and 10. Gradual and progressive organ damage most often leads to death in the puberty period.
- Hypothyroidism and hyperfunction of the adrenal cortex
A type of ALD is adrenomyeloneuropathy (AMD), which is a late type that occurs in young men (before the age of 30). Its main symptom may be progressive spastic paresis of the limbs, impaired sensation and disorders of the sphincters, adrenal insufficiency. In its early stages, these symptoms may suggest multiple sclerosis.
There is no effective treatment for ALD. Usually, patients are offered palliative treatment. In some cases, the disease may be slowed down or stopped temporarily, including through bone marrow transplantation.
He got out of his wheelchair thanks to therapy in the USA?
A friend of Łukasz Mejza stated that after a 3-month treatment in the USA, his condition improved significantly. In the spring of last year, media talked about raising money for Guzowski’s expensive treatment abroad, for which he could go through the Mejzy company. The campaign managed to collect almost 337 thousand. zloty.
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