Understood - still incredibly low from incidence and prevalence numbers when compared to other rare diseases and not so rare diseases.
For instance, breast cancer rates are in the 20-30 per hundred thousand, while more rare diseases like brain cancer, there are only between 7-9 per hundred thousand.
Here we are talking < 1 per hundred thousand. Just makes it very difficult to do credible science. Again, not putting the efforts down, but this disease lacks the strength in numbers, plus its highly lethal in a very short period of time.
I saw its common in more urbanized settings, but results as a genetic mutation passed on to a child from parents (meaning parents are carriers and if the punit square aligns accordingly, the child will have the disease).
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