Perez, THANK YOU so much for posting this. My 20 year old brother and father have both been diagnosed with this genetic disorder since birth. Currently my younger brother is hospitalized due to a massive brain and kidney tumor this disorder caused, and he is awaiting a dangerous surgery tomorrow to attempt to remove the brain tumor. This disorder is extremely under- funded and under- researched, therefore there is no cure. My brother has suffered through over two weeks of experimental drug therapy thus far with no sucess, and I am certain if only more people knew about this disorder then maybe things would not be so difficult. Again, thank you for posting this.. and I am sorry to see the two ignorant comments that have been posted so far on this topic. I guess people only care about things that directly affect them. It's a shame. Thanks again, ~Karolin~
THANK YOU so much for posting this. My 20 year old brother and father have both been diagnosed with this genetic disorder since birth. Currently my younger brother is hospitalized due to a massive brain and kidney tumor this disorder caused, and he is awaiting a dangerous surgery tomorrow to attempt to remove the brain tumor. This disorder is extremely under- funded and under- researched, therefore there is no cure. My brother has suffered through over two weeks of experimental drug therapy thus far with no sucess, and I am certain if only more people knew about this disorder then maybe things would not be so difficult. Again, thank you for posting this.. and I am sorry to see the two ignorant comments that have been posted so far on this topic. I guess people only care about things that directly affect them. It's a shame.
Thanks again,
~Karolin~