May is NF awareness month. When Ricki was diagnosed in 2013 we had never heard of Neurofibromatosis it was like "neuro what?" We had to practice saying her diagnosis so we could tell others. There is much to do to increase awareness and help families through that difficult time when they receive the difficult diagnosis.
Ricki has NF type 2 and she develops tumors on any nerve throughout the body especially along the spine and brain. It affects 1 in 30,000-40,000 people. Ricki has innumerable tumors. In four years she has had 6 surgeries, suffered total hearing loss in one ear, and because of the tumors one of her vocal chords became paralyzed. She has also experienced paralysis of her arm and hand, suffered from seizures, migraines, constant pain and depression - and we consider her blessed and fortunate. These tumors though not always cancerous can cause so much pain and damage and unfortunately sometimes death. We are so grateful to our many friends and family in helping us spread awareness and hope to the many who have been diagnosed and will yet be diagnosed with Neurofibromatosis.
As Ricki says
"I have learned it is important to remember everyone is fighting their own battle.....and the most important lesson I have learned is that We can do this TOGETHER!"
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