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Disability/Allsup
- By GirlA · New reply 1:29 am
- Discussion in Living with NF1 · 11 replies
- Have applied for disability and Medicaid several times in the last four years (including appeals) and keep getting rejected. In previous discussions on this website a couple of people have mentioned Allsup ...
Work & Surgery /Work not Accepting Doc's Note
- By The-Dreamer · New reply yesterday at 10:14 pm
- Journal · 26 replies
- Okay people i need your Help on a matter.I had surgery on my right hand. doctor wrote a note to return to work two days later,but instead a showed up at work the next day and they sent me home due to ...
Is it selfish?
- By lnr99 · New reply yesterday at 10:08 pm
- Discussion in NF1 and pregnancy · 11 replies
- I am just looking for some unbiased opinions. I am 22 and have a 2.5 year old daughter with my husband. She was unplanned is NF free(thank god). I want to give her a sibling so badly, I think it is because ...
PGD for NF1
- By CJnf · New reply yesterday at 9:22 pm
- Journal · 1 reply
- So today I started my medication to begin the IVF process. To avoid passing on NF1 to my children, my husband and I are moving forward with IVF with PGD. For now, I am only doing the birth control pills ...
NFs dateing fellow NF's
- By andrew-herbert · New reply yesterday at 9:18 pm
- Discussion in Off-Topic · 10 replies
- hi this is just asking if any one with NF has or ever thought obout dateing someone ells with NF. and i wanted to no if any one out there agrees with me cos i thing that its ok in the long run and i feal ...
Brain tumor need some support
- By Flairica · New reply yesterday at 9:15 pm
- Discussion in NF1 and pregnancy · 10 replies
- Im a 31 year old Mom of a one year old. I had a brain tumor removed in June and was told it was a astrocytoma stage 3 Im currently 3 weeks into radiation with 3 more weeks to go m-f and 5 days of temador ...
PET Scan Injection/Radiation Reactions?
- By andrewjv · New reply yesterday at 8:49 pm
- Discussion in Living with NF1 · 3 replies
- Tomorrow will be 7.5 months since the removal of a tangerine sized malignant peripheral nerve sheath tumor in my chest. It had been there all my life but suddenly started causing problems last November ...
slogan for new supprt group
The Song Game 2!
help
Plexiform Removal?
- By hedengren · New reply yesterday at 4:14 pm
- Discussion in Newly diagnosed with NF1 · 14 replies
- We just got the official diagnosis of NF1 on Tuesday, though we've suspected it for a long time. The geneticist confirmed that two spots I have been worried about are most likely plexiform neurofibromas ...
NF Walk
- By mommyoftwo35115 · New reply yesterday at 11:35 am
- Discussion in Off-Topic · 3 replies
- For thos e of you who live in or around Leeds, Alabama I am putting on a walk for NF. I would like for eveyone that is availible are who is able to come to do so. Its the first one in Alabama so please ...
Optic Glioma
- By lilmissesmom · New reply yesterday at 10:06 am
- Discussion in NF1 and children · 11 replies
- My daughter was diagnosed with an optic glioma on Monday. I feel like the wind has been knocked out of me. Now we are waiting for the eye exams on Wednesday. She has headaches every day (in the back of ...
Scared about NF1 malignancies
- By alicia0414 · New reply yesterday at 8:10 am
- Discussion in Newly diagnosed with NF1 · 9 replies
- Hi! im 22 years old and have been diagnosed with NF1. My biggest concern is the tumors turning malignant, and them developing in my brain and along my spinal cord. My question is how often do people do ...
Chance to have second child with NF1
- By Marijana · New reply yesterday at 7:20 am
- Discussion in NF1 and pregnancy · 7 replies
- I have 2y old kid with NF1. We don't have it, both. Now, we would like to have another child. And I am wonder, what's possibility to happened again? We have no possibility to do prenatal test and know ...
it seems to be taking forever....
- By brienna · New reply yesterday at 7:02 am
- Journal · 1 reply
- hello, my name is Brienna and i have an amazing boyfriend who i have been blessed to be with for 4 years now (he has NF2) and right now things just seem to be moving very slowly.... we are trying to survive ...
nf1 breast cancer?
- By donaldsonc6 · New reply September 7, 2010
- Discussion in Living with NF1 · 5 replies
- Im almost 30 years of age I have NF1 , and have a family history of breast cancer in my moms aunt. When should I start getting mammograms? My son also was diagnosed with neuroblastoma at the age of one ...
A little overwhelemed..the latest
- By mamaleah1 · New reply September 7, 2010
- Discussion in NF1 and children · 3 replies
- Well, the latest is this. My son is back on Lupron untill they get him into the OR for his implant again and still no decision on how they are treating the Gigantism. My daughter on the other hand has ...
Daughter may have NF1 - need advice/support
- By shroppy · New reply September 7, 2010
- Discussion in NF1 and children · 14 replies
- Hi Everyone, I am new here, and don't know too much about NF yet, so please bear with me. My daughter is currently 17 months old, and at her latest well baby appt, it was mentioned to me that she needs ...
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