#also one of them was harlequin ichthyosis which to me personally is the insane success story of modern medicine | Explore Tumblr posts and blogs

dramatic-dolphin · 2 years ago

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not the person in the notes of that last post going "some syndromes render your life literally unlivable" and then listing two conditions that people are literally living full adult lives with...... ok go tell them their life is unlivable. i don't think they'd agree.

#also one of them was harlequin ichthyosis which to me personally is the insane success story of modern medicine #(it was basically always fatal within the FIRST MONTH of life #and then with a LOT of very intensive modern medical care they could get infants through the critical period #and it turns out that after that period it usually evolves into a less severe form of ichthyosis #that still needs constant medical attention but is more manageable #like is that not fucking insane to you. because it's insane to me #WIKIPEDIA HAS A SENTENCE READING ''the maximum lifespan of patients with the new treatments has not yet been determined''#do you get it. the maximum lifespan used to be measured in weeks.#and now? most of the oldest people with harlequin ichtyosis are CURRENTLY STILL ALIVE #the oldest ever died last year and she was 51 years old #sorry i am. so emotional about this all the time. god i fucking love modern medicine.)#anyways this was actually a person agreeing w/ the post so just remember to check ur thought process sometimes

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