NF clinic tomorrow...

When my youngest son was 3 months old, I heard the word neurofibromatosis for the first time.  It wasn't until he was 3 years old that he was diagnosed with having it.   Now, he is  7 years old and we are dealing with a plexiform fibroma by his spine and a cyst inside his spinal cord. 

What is NF? Neurofibromatosis 1 (NF1) is the most common form of NF, affecting one in every 3,000 births. It is one of the most prevalent genetic disorders and the most common ofthe neurocutaneous disorders (conditions that affect both the skin and nervous system).  NF1 is characterized by pigmented spots on the skin (café-au-lait spots) and tumors that developon nerves anywhere in the body. In some cases, tumors can arise in the brain or on the spinal cord. The disorder also can cause non-tumorous complications such as learning disabilities – which affect up to 60% of all individuals with NF1 – as well as bone or skeletal abnormalities and certain cardiovascular defects. Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body. Plexiform neurofibromas grow diffusely or as nodules under the skin surface or deeper in the body. They may be present from birth, but not initially be noticeable. Plexiform neurofibromaas can develop in any part of the body and tend to grow and intertwine with normal body tissues. They have approximately a 10% chance of becoming cancerous.  If you need more info on NF... click on this link- /NF1-Brochure.pdf

 

Tomorrow we go see the  NF1 specialist in Atlanta and I believe in all of the South East, Kim Uhas from the Scottish Rite Division of Medical Genetics. Astonishingly enough, she is not a doctor but a nurse practitioner. She is so much in demand that there is a 5 or 6 month waiting period in order to see her.  Please pray that we get a good report and that she is pleased with how John-Michael is doing.