~ Ariadne's Personal Awareness Project: (PAP) # 1 ~
Personal Awareness Project NF - Mia's Story Month of March 2011 - NF (Neurofibromatosis)
Personal Awareness Project NF - Mia's Story Awareness Video
By Co-founder Ariadne Popma
By Co-founder Ariadne Popma
Intro about Mia written from her point of view:
Hi, my name is Mia and I am 4 years old. Like most 4 year olds. I like to play at the beach, coloring, playing games, playing dress up, reading books, playing outside, singing, and being silly. But I am also different from other kids my age. Do you know why? I do... It's because I can say Neurofibromatosis. Can you? Have you ever heard of Neurofibromatosis (NF)? I have...the first time I heard these words was when I was an infant.
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This is a picture of me and my daddy. I love my daddy very much and he also has NF. I don't know much about NF, but my daddy dose. My daddy says “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. 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 also affects each person differently and can be a quiet, non-bothersome disease and it can also be noticeable to peers, painful and life-threatening.” I don't know what that means. Do you?
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Mia's Story Written By her dad ( Danny Rashkind)
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was a 66 week treatment plan and about half way through we found out that Mia was allergic to. We had to start over from day one and now we are on our third drug. Mia just recently had a follow up MRI and the tumors are stable, the goal of the chemo is to stabilize the tumors, so it is doing its job and at this time Mia is no longer on chemo. Mia has fought two brain tumors, two years of constant chemo, numerous MRI's, blood work and lots of other tests, and appointments and still has hope for a cure.”
Facts About NF
What is NF?
How many kinds of NF are there?
3 types:
How common is NF?
How doses an individual get NF?
Whats the difference between NF-1 & NF-2?
What are the symptoms of NF?
- NF (Neurofibromatosis) is a genetic disorder that causes tumors to form on the nerves of the body that can appear either internally or externally.
How many kinds of NF are there?
3 types:
- NF-1 (most common form)
- NF-2 (second common form)
- Schwannomatosis (Newly Identified & Rare; ONLY shows up in 1 in 40,00 births)
How common is NF?
- NF-1 appears in 1 in 3,000 births making NF the most common genetic disorder in the world.
- This disorder affects at lest 100,000 Americans and affects over 2 million other people world wide.
- NF-2 appears in 1 in 50,000 births and both NF-1 & NF-2 there is a 50-50 chance that an individual with NF will pass NF to their child.
How doses an individual get NF?
- NF is a disorder caused by a chromosome change and there are two different forms of NF know as NF-1 & NF-2.
Whats the difference between NF-1 & NF-2?
- NF-1 is caused by a change on chromosome 17, while NF-2 is caused by a change on chromosome 22. Since NF-1 and NF-2 are caused from change on different chromosomes NF-1 and NF-2 do not occur in the same family, meaning a person with NF can only have either NF-1 or NF-2 depending on which type of NF runs in a person's family.
What are the symptoms of NF?
- Multiple birth marks
- Freckles
- Dark growths on colored portion of the eyes called iris Lisch nodules
- Rubbery
NF-1
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NF-2
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What are the effects of NF on an individuals body?
NF-1
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NF-2
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What types of treatment options are available for NF?
There is no specific treatment for NF, but possible treatments may include:
There is no specific treatment for NF, but possible treatments may include:
- Chemo therapy
- Radiation therapy
- Surgery to remove tumors
- Blood test to check counts and levels for patients on chemo & radiation therapies
- Genetic counseling
End Note From Mia's Dad & How You Can Help Others affected With NF
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Sources: Children's Tumor Foundation, NF inc,
Can Mia Get 1,000,000 Fans to Raise Awareness for Neuro-Fibromatosis, & Danny Rashkind |
Lasted Updated 07/10/12