About My Medical Problems

Over the years, I have suffered from a neurological problem. A problem that only a few people in my daily life actually know about. It is to the point, where occasionally, someone will ask what the spots on my arm are. When I was in Chicago and able to get treatment with the socialized medicine at Cook County Hospital (the County owned hospital in Chicago), I was able to get them cut off. The problem, I wanted them all removed at once. They wanted to remove them one at a time, to minimize the pain. So in the end, I only had one removed before I left Chicago to move back to Kansas.

It was in Chicago, that I learned that I had two of these spots (tumors) setting on my brain. It was recommended that nothing be done about these spots, unless they start to get bigger or cause problems. Close monitoring by MRI was recommended. It has been more then 10-years since I have had an MRI (due to costs). What is this problem? It is called Neurofibromatosis (NF).

What is NF

Neurofibromatosis(NF) is an illness of the nervous system. It causes benign tumors to grow in our body all our lives. There is currently no known cure for NF.

There are two distinct types of NF. Neurofibromatosis Type 1(NF1) and Neurofibromatosis Type 2 (NF2).

NF1 (affecting 1 in 3,000) is the result of a mutated gene on chromosome 17. It causes benign tumors to grow on peripheral nerves, under and on the skin and growth of Cafe-Au-lait spots that can be disfiguring. Some people with NF1 also develop optic gliomas, skull base tumors, and tumors that grow deeper in the body. Children with NF1 are known to have developmental abnormalities such as learning disability and gross motor delay.

NF2 is a rare form of NF (affecting 1 in 25,000). It is the result of a gene mutation on chromosome 22, causing tumors to grow in the brain and spine. The hallmark of NF2 is the acoustic neuroma which grows on both acoustic(hearing) nerves to the brain. It causes bilateral deafness and inbalance prior to its removal. Multiple tumors along the spinal cord is inevitable. People with NF2 also develop tumors in or on the skin and CAL spots though lesser than people with NF1.

A newly discovered type of NF is Schwannomatosis (affecting 1 in 40,000). People with Schwannomatosis develop multiple schwannomas on cranial, spinal and peripheral nerves–but they do not develop vestibular tumors and do not go deaf. Affected individuals usually have much greater problems with pain than with neurological disability, although as with all forms of NF, Schwannomatosis may vary greatly between patients. They also do not develop any other kinds of tumors (for example, meningiomas, ependymomas or astrocytomas) and do not have learning disabilities. For reasons not yet understood, people with Schwannomatosis have problems with chronic pain that often exceeds their neurological problems.

NF is a very rare and unknown illness. NF2 alone affects one in every 40,000 births in the United States. Even so, it dread the lives of people suffering from it. Diagnosis may be a long way because not all doctors are experienced enough especially in developing and under-developed countries. The first synthoms of NF usually appears during teenage- a time when one is most vulnerable. Early detection is essential in minimising the effects of NF.

More lives can be eased If the public is educated about NF.

For more info: The Children's Tumor Foundation and Neurofibromatosis.

I know I have NF1. Due to the fact that I have not been able to afford new MRI's (or newer PET scans) and the fact that the MRI scan can't go below my neck, due to the stainless steel Harrington rod in my back (and not talking to a specialist since this the new variaty was discovered), I do not know if I have Schwannomatosis or just NF1.

One famous person, that I know of that has Neurofibromatosis is Gillian Anderson (The X files).

NF is more prevalent than Cystic Fibrosis, Duchenne Muscular Dystrophy and Huntington’s Disease combined. Yet, is lesser known by the public.

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