for those of you who don't know...i have a genetic disorder called neurofibromatosis...according to the neurofibromatosis, inc....Neurofibromatosis (NF) is a genetic disorder of the nervous system which causes tumors to form on the nerves anywhere in the body at any time. This progressive disorder affects all races, all ethnic groups and both sexes equally. NF is one of the most common genetic disorders in the United States (one in every 3,000 to 4,000 births)... (i was lucky to be 1 in 3,000 to 4,000 - if only i had the same luck odds in winning the lottery) ...NF has two genetically distinct forms: NF-1 and NF-2. (i have NF1) The effects of NF are unpredictable and have varying manifestations and degrees of severity. There is no known cure for either form of NF, although the genes for both NF-1 and NF-2 have been identified.
NF is an autosomal dominant genetic condition; it is not contagious. (when i was a kid i had a few kids ask me if it was contagious...wanted to know "can i catch it"...no, no, you can't...i'm not throwing it to you or another question would be are those chicken pox scars) Approximately 50% of those affected with neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. (i am a mutation...ha!) If an individual does not have NF, s/he can not pass it on to his/her children. Joseph Merrick, whose condition was depicted in the play and film, The Elephant Man, is often incorrectly thought to have had neurofibromatosis. (i was told this as a kid too, that i had the elephant man's disease...you could only imagine what that could do to a little kid...then when i was 8 or 9, watching the elephant man movie freaked me out, his deformities scarred me...then i was reassured that it was a different disorder) Merrick's condition has been identified as Proteus Syndrome, a disorder similar to NF, but unrelated.
NF-1 according to medlineplus...is a condition characterized by changes in skin coloring (pigmentation) and the growth of tumors along nerves in the skin, brain, and other parts of the body. The signs and symptoms of this condition vary widely among affected people.
Beginning in early childhood, almost all people with neurofibromatosis type 1 have multiple café-au-lait spots, which are flat patches on the skin that are darker than the surrounding area. These spots increase in size and number as the individual grows older. Freckles in the underarms and groin typically develop later in childhood. (after melinda read this...she made me show her my armpit)
Most adults with neurofibromatosis type 1 develop neurofibromas, which are noncancerous (benign) tumors that are usually located on or just under the skin. These tumors may also occur in nerves near the spinal cord or along nerves elsewhere in the body. Some people with neurofibromatosis type 1 develop cancerous tumors that grow along nerves. (this has occurred twice for me, to be discussed in future posts) These tumors, which usually develop in adolescence or adulthood, are called malignant peripheral nerve sheath tumors. People with neurofibromatosis type 1 also have an increased risk of developing other cancers, including brain tumors and cancer of blood-forming tissue (leukemia). (the tumors that i had were called sarcomas) Soft tissue sarcomas are malignant (cancerous) tumors that can develop from fat, muscle, nerve, fibrous tissues surrounding joints, blood vessel, or deep skin tissues. They can develop in any part of the body.
During childhood, benign growths called Lisch nodules often appear in the colored part of the eye (the iris). Lisch nodules do not interfere with vision. Some affected individuals also develop tumors that grow along the nerve leading from the eye to the brain (the optic nerve). These tumors, which are called optic gliomas, may lead to reduced vision or total vision loss. In some cases, optic gliomas have no effect on vision.
Additional signs and symptoms of neurofibromatosis type 1 include high blood pressure (hypertension), (my blood pressure is always pretty low) short stature (i am the shortest one in my family), an unusually large head (macrocephaly), (i think my head is on the smaller side of large, you too better think my head is on the smaller side of large) and skeletal abnormalities such as an abnormal curvature of the spine (scoliosis). Although most people with neurofibromatosis type 1 have normal intelligence, learning disabilities and attention deficit hyperactivity disorder (ADHD) occur frequently in affected individuals. (well as you all BETTER know...my intelligence level is way above normal, have never been diagnosed with any learning disabilities, and i am usually pretty focused).
so i know this is a lot to throw at you...but i wanted you to have a better understanding of what NF is...so as i post you know what i am talking about.
NF is an autosomal dominant genetic condition; it is not contagious. (when i was a kid i had a few kids ask me if it was contagious...wanted to know "can i catch it"...no, no, you can't...i'm not throwing it to you or another question would be are those chicken pox scars) Approximately 50% of those affected with neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. (i am a mutation...ha!) If an individual does not have NF, s/he can not pass it on to his/her children. Joseph Merrick, whose condition was depicted in the play and film, The Elephant Man, is often incorrectly thought to have had neurofibromatosis. (i was told this as a kid too, that i had the elephant man's disease...you could only imagine what that could do to a little kid...then when i was 8 or 9, watching the elephant man movie freaked me out, his deformities scarred me...then i was reassured that it was a different disorder) Merrick's condition has been identified as Proteus Syndrome, a disorder similar to NF, but unrelated.
NF-1 according to medlineplus...is a condition characterized by changes in skin coloring (pigmentation) and the growth of tumors along nerves in the skin, brain, and other parts of the body. The signs and symptoms of this condition vary widely among affected people.
Beginning in early childhood, almost all people with neurofibromatosis type 1 have multiple café-au-lait spots, which are flat patches on the skin that are darker than the surrounding area. These spots increase in size and number as the individual grows older. Freckles in the underarms and groin typically develop later in childhood. (after melinda read this...she made me show her my armpit)
Most adults with neurofibromatosis type 1 develop neurofibromas, which are noncancerous (benign) tumors that are usually located on or just under the skin. These tumors may also occur in nerves near the spinal cord or along nerves elsewhere in the body. Some people with neurofibromatosis type 1 develop cancerous tumors that grow along nerves. (this has occurred twice for me, to be discussed in future posts) These tumors, which usually develop in adolescence or adulthood, are called malignant peripheral nerve sheath tumors. People with neurofibromatosis type 1 also have an increased risk of developing other cancers, including brain tumors and cancer of blood-forming tissue (leukemia). (the tumors that i had were called sarcomas) Soft tissue sarcomas are malignant (cancerous) tumors that can develop from fat, muscle, nerve, fibrous tissues surrounding joints, blood vessel, or deep skin tissues. They can develop in any part of the body.
During childhood, benign growths called Lisch nodules often appear in the colored part of the eye (the iris). Lisch nodules do not interfere with vision. Some affected individuals also develop tumors that grow along the nerve leading from the eye to the brain (the optic nerve). These tumors, which are called optic gliomas, may lead to reduced vision or total vision loss. In some cases, optic gliomas have no effect on vision.
Additional signs and symptoms of neurofibromatosis type 1 include high blood pressure (hypertension), (my blood pressure is always pretty low) short stature (i am the shortest one in my family), an unusually large head (macrocephaly), (i think my head is on the smaller side of large, you too better think my head is on the smaller side of large) and skeletal abnormalities such as an abnormal curvature of the spine (scoliosis). Although most people with neurofibromatosis type 1 have normal intelligence, learning disabilities and attention deficit hyperactivity disorder (ADHD) occur frequently in affected individuals. (well as you all BETTER know...my intelligence level is way above normal, have never been diagnosed with any learning disabilities, and i am usually pretty focused).
so i know this is a lot to throw at you...but i wanted you to have a better understanding of what NF is...so as i post you know what i am talking about.
7 comments:
we love virlena reed 4-eva. AND, we think that you're brain is top-notch, friend, although we have seen you a little unfocused at times, mostly when "color me bad" is played in your presence. we're so excited about your blog. j wants me to change this message to say "i" instead of "we", but secretly i know j shares all my sentiments. you are super rad. 4-eva. and eva. and eva.
now THAT is what i call an intro post!
work it on OUT. i appreciate you sharing this part of your life with us.
you are much loved and admired, v. and you continue to have a great sense of humor...one of the many things i love about you, homeskillet.
btw, your head is soooo nicely-sized. i can only wear hats now b/c i don't have hair. when i had locs? oooooooooooooooooooooooeeeeeee! i had to take ibuprofen to wear a hat. ow.
*W*
thanks for including us in on your stuff.
i have always been a big fan of your head and all that is inside of it!!
i love you. love love love!!!!
word homey, just word!
Okay....I know compared to my head...your head is normal sized. I think anyone's head compared to my head is normal sized...but besides that, I am glad that you are opening your head and heart and letting folks know what's going on with you....now about being focused....not so much when gary is chewing on something. Or if I'm chewing on something! Love n hugs n such n such.
"Freckles in the underarms and groin typically develop later in childhood."
wait. melinda only made you show her your armpit after she read that?! ;)
I wish I had your spirit, man--
did you always have this sense of humor (lol).
and your head? considering mine is, I think, quite a bit larger, i will make no comment on yours (you small headed woman) lol.
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