Interesting articles this week are linked below. Highlights include a 132 pound tumor, a new (and basic) approach to helping the homeless, and an in utero first.
Apparently, this tumor had been growing at a rate of about 10 lbs per week since November. It is unclear why medical attention was not sought sooner. However, fear and denial can play a large part in not getting timely care for many patients.
Happy to see a pharmaceutical company taking interest in a story of basic human needs. Many people would not even think of barriers the homeless have to basic hygiene necessities. I have seen many well intentioned “Kits” distributed to the homeless with toothbrushes, combs, and soap- but I have never once seen it contain tampons or pads. Perhaps they can help change the conversation regarding a basic need not being met.
MIT Technology Review- By Antonio Regalado
Fascinating article and the implications are profound. Perhaps not in scope of # of patients for this particular disorder (as this is a very rare condition) but in a larger picture with how this can be applied and studied for many genetic disorders for which we have no cure. This is yet another example for why it is important to promote and fund research on rare conditions that would otherwise be abandoned due to lack of marketability and profitability.