Neurofibromatosis
Forum

Current topics:

• - How has living with neurofibromatosis affected your daily life?
  Hello everyone, We have created a new dedicated group to neurofibromatosis. For the first discussion here in the "Living with neurofibromatosis," please introduce yourself and talk about how neur

Current topics:

• - What are the most troubling symptoms and complications?
  Hi everyone, Neurofibromatosis is a condition that can cause tumors to form in the brain, spinal cord, and nerves, which can cause varying symptoms and complications. What are the most troubling sy

Current topics:

• - Have you had surgery to remove problematic growths and/or tumors? Share your experience
  Hi everyone, while there is no cure at this time for neurofibromatosis, one of the more common treatments is an operation to remove problematic growths or tumors. Such an operation, and the therapy a

Current topics:

• - What is the most frustrating or difficult aspect of living with a rare disease?
  Hello everyone,  How are you today? As you already know, a diagnosis of a rare disease can have a huge impact on one's life. It can bring new insights and information, but also many questions, cha

Current topics:

• - Do you have a Bucket List?
  Hello everyone, You can call me movin_on. I am diagnosed with Parkinson's. For those of you who may not be familiar with this term, a Bucket List is a list of things that one has not done before bu
• - Applying for Supplemental Security Income (SSI)
  Hello I have Spina Bifida and Hydrocephalus.I have tried applying for SSI disability but have been denied because I have to work to support myself in the meantime.Has anyone experienced this and we're
• - Do you have a support animal?
  Hello,  I have depression, anxiety, and epilepsy.  Does anyone have a support animal to calm you down or in this case a trained dog for epilepsy? I've had dogs practically all my life but now my b