The Importance of Treating Plexiform Neurofibromas
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So a team of dedicated specialists are best serving that patient when they think about how can we protect or optimize the person's comfort and function. That could include surgery, but many times because it's a web or network like abnormal tumor growth along the nerves, that's not possible.
However, thankfully in 2020, there's been a new medication that has been FDA approved in patients two years old and older that have inoperable or incompletely operable plexiform neurofibromas that can undergo a daily medication. The goal of that medication is to try to slow down the growth rate or keep it stable for a longer period of time.
Those medicines are not designed to eradicate or remove the plexiform neurofibromas or the neurofibromatosis, but they can slow down how it affects each individual patient. The earlier patients and families identify that a patient has a known or suspected plexiform neurofibroma or neurofibromatosis, the better they can get a team around them to help them with their best, highest quality life.
ERIN DUNBAR
The goal of treatment for plexiform neurofibromas when they are diagnosed is to help that individual patient with how they're affecting them. So for many of those patients, those plexiform neurofibromas becomes symptomatic, depending on if they're deep or peripheral. That could be pain, but could also be dysfunction or difficulty with mobility. So a team of dedicated specialists are best serving that patient when they think about how can we protect or optimize the person's comfort and function. That could include surgery, but many times because it's a web or network like abnormal tumor growth along the nerves, that's not possible.
However, thankfully in 2020, there's been a new medication that has been FDA approved in patients two years old and older that have inoperable or incompletely operable plexiform neurofibromas that can undergo a daily medication. The goal of that medication is to try to slow down the growth rate or keep it stable for a longer period of time.
Those medicines are not designed to eradicate or remove the plexiform neurofibromas or the neurofibromatosis, but they can slow down how it affects each individual patient. The earlier patients and families identify that a patient has a known or suspected plexiform neurofibroma or neurofibromatosis, the better they can get a team around them to help them with their best, highest quality life.