It has been 4 years since I last ate 😳 #rarecondition #loeysdietzsyndrome #borndifferent – Video

It has been 4 years since I last ate 😳 #rarecondition #loeysdietzsyndrome #borndifferent – Video

The video “I haven’t eaten in 4 years 😳” sheds light on the life of a person with an ultra-rare condition called Lois de syndrome. With only 1 in 70 million people affected by this condition, the individual in the video shares their struggles and experiences. They reveal that many of their organs have either not formed properly or have started shutting down, leading to a significantly reduced life expectancy. The emotional toll of living with this condition is evident as they discuss their father’s feelings of guilt for passing it down and the difficulty of joking about it as a coping mechanism. Despite the challenges, the individual bravely shares their story in the hopes of raising awareness about their condition and providing insight into the lesser-known aspects of living with a rare condition. The video serves as a reminder of the resilience and strength of those living with rare conditions, as well as the importance of empathy and understanding towards their experiences.

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Video Transcript

1 in 70 million people have my condition I have an ultra rare condition called Lois de syndrome many of my organs have now either not formed properly or have started shutting down the average life expectancy for somebody with my condition is 36 years old it could happen tomorrow it could happen in five

Six years and it will happen out of the blue I think I’ve given up on the prospect of everything is going to be fine my dad and I have spoken a little bit about how he feels about the fact that I inherited it from him

And I know that he feels guilty I think he finds it quite difficult sometimes to even look at me because I think he finds it quite emotional because I think sometimes he thinks it’s his fault but it’s not his fault at all we try and we

Joke about it and saying that I am the gift that keeps on giving but that is like sort of nervous laughter um I I really yeah you find you find it difficult don’t you I find it difficult very very difficult indeed yeah

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Video “I haven’t eaten in 4 years 😳 #ytshorts #shorts #borndifferent #rarecondition #loeysdietzsyndrome” was uploaded on 01/06/2024 to Youtube Channel truly