The Reality of an Undefined Diagnosis | The Majid Khan Podcast

Ajouté : 2026-06-03

[00:00:00]arthrogryposis multiplex congenita. I know that's a very long name.

[00:00:02]>> Mhm.

[00:00:03]>> Uh but yeah, um so essentially I have limited movements and contractures of my main limbs, so my hands and my legs. And I've got scoliosis, which means my spine is not straight.

[00:00:14]>> Mhm.

[00:00:15]>> Uh along with my neck. Uh but other than that, my brain works fine.

[00:00:18]Alhamdulillah. I've got weak immune system and respiratory system. So I require support, or certainly did, since 2016 on a BiPAP machine to help me with breathing at night.

[00:00:29]It's a very rare condition, apparently, I'm told. And in fact, interestingly, when we came here in '07, the doctors actually said, "We can't even guarantee that you have this condition. They just call it often a undefined neuromuscular disease because they can't put their finger on exactly what it is."