next year
September 26, 2009 10:04am
I have come up with ideas to raise awareness for nf for next year. just have to work on getting all the supplies together.
Progress
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jibo 
9:46pm, October 16, 2009
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About Me
jibo
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About Me
I had 2 boys a 5yo and an 18month old who had neurofibromatosis and just recently passed away. I feel like half my heart is missing and nothing will ever fill it again.
I had 2 boys a 5yo and an 18month old who had neurofibromatosis and just recently passed away. I feel like half my heart is missing and nothing will ever fill it again.
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Journal
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This entry is private
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This entry is private
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Hugbook
Well Done
Good luck! Let me know how i can help :)
Hug
I’m With You
hello my friend .
i hope your are doing well.................
Sorry
I am sorry to hear about your son.
Sympathy
take it one day at a time best wishes maggie
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Photos
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Support Groups
Close Eczema
I have been dealing with eczema from the time I was little.And it seems to be the worst when my emotions are raging for instance if I get upset stressed,worried,sad anything like that for a period of time I get really bad flare ups.Also I cant use cleaning products unless i wear gloves.Its even gooten so bad I have to call my mil to come wash my hair.now I have it on my face and I dont like going out beause of it
Treatments
- Aloe Vera Not Working
- Made it worse
- Eucerin Working / Worked
- It seems to be working right now
- Evening Primrose Oil Somewhat Helpful
- Worked for awhile
- Hydrocortisone Not Working
- doesnt work
Close Neurofibromatosis
I have a 8 month old son who has nf-1.He has a trach and a feeding tube do to the location on his tumors.He has had a debulking surgery but it grew back in a couple months.Nobody in our family has nf the docs say its just a genectic mutation.We where told that only 11 babies in the world was born with this that was noticable from birth and from my understanding they are not living
