Venous malformation - genetic defect: Sophia Thomalla speaks for the first time about an incurable disease


Writed by - Andy Gocker
  Sophia Thomalla speaks for the first time about an incurable disease

Sophia Thomasla (32) is usually an absolute radiant woman and is best known for her quick-witted sayings. But now she strikes surprisingly serious tones online and speaks for the first time about her illness, which has accompanied her since birth.

Rare genetic defect

“You know I never actually speak into this camera. I don't advertise on Instagram, if only for my own companies or for high quality collaborations. I've never done it and I'm doing it once for a very good reason,' Sophia Thomalla begins her Instagram story. It is obviously difficult for her to talk about the topic that is coming up now.

Sophia has suffered from a so-called venous malformation since birth. 'Translates a vascular malformation. This is a very rare genetic defect that doctors still can't really explain where it comes from,' explains the actress' daughter Simone Thomalla : 'By the way, the disease is not curable, so in over 90 percent.'

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Countless surgeries for Sophia Thomalla

Sophia goes on to say that she has already had many surgeries: 'From childhood to now. And I'm about to have my next surgery. My right forearm is affected and yes... That shouldn't be a whining either.' It is important for her to emphasize that despite everything, she is doing excellently and is not particularly restricted. Except that it has to be checked annually. 'Otherwise I'm bomb,' she clarifies.

Sophia goes on to report that venous malformation is an extremely rare genetic defect and the effort for doctors is great: 'The operations take a long time, it's all very microscopic, I would call it 'plumbing', very complicated and the Compensation for this is not very high. That's why there are so few doctors who want to become a doctor for vascular malformations.” She's lucky that she's had a professor by her side since she was a child – but that's not the case for many.

The 32-year-old then talks about a little girl from Russia who has the same illness as her – only that she is a lot worse. She urgently needs life-saving surgery, but nobody can or wants to help her: “No one wants to donate to her because she comes from Russia. Which I find so unbelievably sad, because what does the poor girl have to do with the war?” Sophia's doctors in Germany would be willing to help. However, since the operation costs 30,000 euros, she would be extremely happy if one or the other follower could help: 'That would really do me a huge favor.' (dga)

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