Sunday, January 2, 2022

Arthrogryposis multiplex congenita

 https://www.youtube.com/watch?v=qBFjGQekES4

See: https://childnervoussystem.blogspot.com/2015/05/triumph-over-adversity.html

2 comments:

  1. From a colleague: I bet he has dropped head syndrome. Probably lamin A/C or SEPN1.

    ReplyDelete
  2. A 44-year-old Brazilian man who was not expected to live past 24 hours after being born with an upside-down head has now had to put his life on hold after catching COVID-19, according to a report.

    Claudio Vieira de Oliveira, of Monte Santo, suffers from arthrogryposis multiplex congenita, a rare condition that has left his head turned all the way back, the US Sun reported.

    It also has left him with muscular atrophy in his legs and arms stuck by his chest, but it has not stopped him from living a fulfilling life and becoming a motivational speaker.

    “I’ve never had (difficulties), my life is normal,” he told local news outlet G1.

    But the ambitious and fun-loving man has contracted the bug and has had to remain at home.

    “I’m in full-on quarantine because this COVID very aggressive, it’s lethal, so we’re scared. Spare me, God, from this damned illness,” Oliveira told the outlet.

    “I’m being over twice as careful, I’ve been isolating for over a year and I only leave the house to sort out things that only I can do, such as banking,” he added.

    Claudinho, as he’s known, has never let his condition hold him back and has been walking on his knees since he was 7 years old. He learned to read and write at home from his mom.

    And despite his acute deformity, he has no trouble seeing, breathing, eating or drinking.

    Claudinho also has launched a DVD, an autobiography and has been giving motivational speeches since 2000 — so being cooped up has been challenging.

    “I’m missing it so much. I’ve got a speech in the municipality of Bezerra, in the state of Pernamubco, scheduled for April 28. If the pandemic eases, we’ll go ahead,” he said.

    Claudinho, who volunteers with the Alegra-te Christian educational project for vulnerable children, told local media: “I want to give my talks again and live for many years.”

    “I’m in full-on quarantine because this COVID very aggressive, it’s lethal, so we’re scared. Spare me, God, from this damned illness,” Oliveira told the outlet.

    “I’m being over twice as careful, I’ve been isolating for over a year and I only leave the house to sort out things that only I can do, such as banking,” he added.

    Claudinho, as he’s known, has never let his condition hold him back and has been walking on his knees since he was 7 years old. He learned to read and write at home from his mom.

    And despite his acute deformity, he has no trouble seeing, breathing, eating or drinking.

    Claudinho also has launched a DVD, an autobiography and has been giving motivational speeches since 2000 — so being cooped up has been challenging.

    “I’m missing it so much. I’ve got a speech in the municipality of Bezerra, in the state of Pernamubco, scheduled for April 28. If the pandemic eases, we’ll go ahead,” he said.

    Claudinho, who volunteers with the Alegra-te Christian educational project for vulnerable children, told local media: “I want to give my talks again and live for many years.”

    https://nypost.com/2021/03/25/man-with-upside-down-head-puts-life-on-hold-after-catching-covid/

    ReplyDelete