Neurofibromatosis i hate it

[BabyGirl747]

i find it hard to live with neurofibromatosis (neurofibromatosis is a genetic disorder that causes non cancerous tumors to grow under the skin and on the nerves you can read more about neurofibromatosis at www.ctf.org ) because docotors never listen they dont understand neurofibromatosis at all and they dont even try its so hard to find a good doctor or even one that knows what neurofibromatosis is, there is ONE doctor ONE surgeon who actually listens to me, but he cant do surgery on the tumors in my chest that are causing me major pain my chest pain has landed me in the hospital many times, one time in may of 2008 it was so bad my mom had to call 911 i was in the hospital for 6 days, we cant find anyone who is willing to do surgery for me, i hope and pray that we do find someone who can take away some or all of my chest pain

[✿ Orchidaceous]

Hello there. :]

I'm sorry to hear about your condition and that you're finding it difficult to live with. It's perfectly understandable that you're finding it difficult to live with and you're welcome to talk about it whenever you want to!

I've never really heard too much about it! Is it Neurofibromatosis type 1 or Neurofibromatosis type 2? I can sympathise with doctors never listening, have you ever seen a counsellor or therapist or another person you would find it easy to talk to? Perhaps it would help to have somebody to talk to. People often don't understand the situation as they have never been in it themselves, it's difficult for them to imagine the difficulties that you're having and how best to help. The more you tell people the more likely they are to understand, I'm sure the more you tell your doctor and surgeon the more they will be able to help!

As for the surgery, I'm sorry to hear that they can't perform surgery. Are you aware of what is causing the chest pain and are there any ways to prevent it so you can have surgery in the near future? Also, is there reasoning behind nobody being willing to perform surgery? It might benefit you to not have surgery right now or it may do more damage than good.

Feel free to drop me a message if you ever need anything.
Rie.