If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.
Find out how to let us know if you're concerned about another member's safety.
Find out how to let us know if you're concerned about another member's safety.
Hi, my name is EllieP! Does anyone have experience of Neurofibromatosis 1 (NF1)?
EllieP
Community member Posts: 3 Listener
Hello, I'm pleased to join this forum. I have siblings on Special Guardianship who both have disabilities as a result of a genetic condition Neurofibromatosis (NF1). I'd like to know if there's anyone in this forum with experience around NFI. Thanks in advance.
Comments
-
Hello @EllieP - & welcome to this supportive community. Whilst I know about Neurofibromatosis (I'm a long-retired physio so have read about this), I don't have experience of it, tho I believe we have had some members with NF1. Have you looked at this charity too? Please see: https://nervetumours.org.uk/Most of our members have many different disorders, but we're always here for support, & sometimes may have answers for any query you have, so please let us know if we can help in any way. We're pleased to have you join too.
-
Welcome to the community @elliep Thanks for joining, and for sharing a bit about yourself and your siblings.
I don't have any personal experience of NF1, but I hope that another member with experience will come along soon. I've tweaked the title of your post and moved it into a different category so that it'll be easier for other members to find.
Did you have a specific question, or are you just looking for people who can understand what you and your family are going through? -
Brightness
Categories
- All Categories
- 13.3K Start here and say hello!
- 7K Coffee lounge
- 101 Games lounge
- 482 Cost of living
- 4.6K Disability rights and campaigning
- 1.9K Research and opportunities
- 230 Community updates
- 9.6K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 806 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 666 Dating, sex, and relationships
- 374 Exercise and accessible facilities
- 845 Transport and travel
- 32K Talk about money
- 4.6K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.1K PIP, DLA, and AA
- 5K Universal Credit (UC)
- 6.4K Talk about your impairment
- 1.8K Cerebral palsy
- 885 Chronic pain and pain management
- 183 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.3K Mental health and wellbeing
- 328 Sensory impairments
- 832 Rare, invisible, and undiagnosed conditions
Complete our feedback form and tell us how we can make the community better.