Present day patients with Proteus Syndrome, have, thankfully, fewer symptoms than Merrick, (who lived over one hundred and twenty years ago). His case remains unparalleled, so, I wonder, would even today's medicine have the answers. How would he be treated differently today? Would that treatment differ from the type given to other Proteus patients? Please indulge me, what I'm trying to say, in my somewhat clumsy fashion is, would modern medicine hold the answers to treat Merrick if he were alive today, considering the severity and uniqueness of his case.
PLEASE NOTE: This is just a discussion topic, I'm not expecting to be told the answer.
That's a tough question that could probably best be answered by someone with Proteus. The people I know have gone through multiple surgeries for bone and tumor overgrowth, pins to straighten fingers and limbs, even
ReplyDeleteamputations.
There's stronger pain relief than what Joseph would have had - perhaps Treves gave him laudanum and just enough morphine to keep him from becoming addicted. It seems there's not much more surgical treatment available yet.
however, there's new hope for effective drug therapy now that Dr Biesecker & his team have found the cause of Proteus. Hopefully their continued work will lead to a cure for Proteus and even some types of cancers.
If Joseph were to have surgery to remove the excess tissues, I think he would also need a lot of physical and occupational therapy. For instance, if he received a prosthetic hip joint, he'd probably have to learn a whole new way of walking.
ReplyDeleteAlso, the surgeons might be able to use metal plating on his skull that could slow down, or even stop some of the bony overgrowth.
If all that could be done, I doubt Joseph would wind up looking like Brad Pitt in the end, but removing the symptoms of his disorder would certainly give him a better quality of life. He's be able to move around easier, and maybe even sleep lying down.