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I am by no means an expert, but I was just researching this genetic disease and found that there are cases of affected individuals living past the expected less-than-one-week lifespan. The oldest affected person is Nusrit Shaheen, born in the late 1980s (1986, maybe?). It is not curable, and it is extremely difficult to keep under control, but it has been done.

I hope this helps, and again, I'm merely a student who has been reading up on this- so if anyone want to improve upon my answers, please don't hesitate!

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14y ago
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14y ago

Yes, you certainly can. And unfortunately mortality rates are extremely high for this genetic disease. Some of the most common causes of death are dehydration and infection (the skin is cracked and is not a good barrier against bacteria.)

Keep in mind that this disease is genetic, and only those with two sets of the mutated gene(s) in question are "affected." Those with just one are considered carriers, but do not display the symptoms and are not at risk of dying from the disease.

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Q: Can you die from Harlequin Ichthyosis disease?
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