What are these tumors?
Why do these tumors do so much damage?
Is there anything one can do about it once they are diagnosed with these?
(these pictures are NOT my own. I found them thank to Google images)
Plexiform Neurofibromas are ill-defined (meaning they are not round and typically grow deep within tissue and bone), slow growing masses that have been described as feeling like a "bag of worms". These tumors are typically benign and are common with NF, but not everyone NF will present with them.
Studies say that about 30% of people diagnosed with Neurofibromatosis, have these types of tumors, affecting them in many different ways. The growth rate is unpredictable, leaving some not diagnosed until adulthood, while with others these tumors are unmistakably present, causing deformities of the bone and skin in beginning in childhood.
Since NF can affect every organ in the body, "plexis" can appear anywhere, and cause significant damage. The only treatment is to debulk the tumor as total removal is not usually possible, due to the tumor being wide spread, attaching to nerves and organs.
Recently, my 13 yr old son was diagnosed with "many" small plexiform tumors, affecting his spine, and under his left arm. I find it extremely frustrating when the doctors tell me, "there's nothing we can do". What do you mean there is NOTHING you can do? Aren't the doctors supposed to have the answers? The cure? The treatment?
This is the world of NF. This disorder leaves most of us praying for it to stay "mild", or for the progression to suddenly stop. I know for myself, I have a hard time knowing that while my NF may be "not so bad" now, it can take a cruel and steady turn, at any time.
This is why it is so important to focus not on my disorder, but on everything around me that IS good. I am so much more than NF. I am stronger and more powerful than anything that comes my way....and my goal is to teach my children this too.
NF throws a fork in the road of life. You can choose to go down the path of anger, regret, and fear. Or you can take the path of light and strength. Both are sometimes very hard roads, but there is only one that will take you to a place of HOPE.
I am in this fight, just like you. You are not alone.