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Neurofibromatosis thumbnail of directory

also listed as Von Recklinghausen disease

87 people found, showing 1 to 25

To save room on the page we use the term disabled to indicate those with disabilities, special need or a medical condition.
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Bath & NE Somerset ( Somerset )

Mar 2004  male
Family type: two parent family
Siblings: 2
Disabled siblings: 2
Username: madjanie
Relationship: Mother
Last updated: 10 Aug 2012
Brief summary: My youngest has global developmental delay which affects his speech. motor skills & co-ordination the most. I also have a 19 yr old with Chronic Fatigue Syndrome and a 16 yr old with NF1 and a Chiari Malformation.

Birmingham ( West Midlands )

Apr 1994  male
Family type: single parent family
Siblings: 2
Disabled siblings: 1
Username: BrummieGyal
Relationship: Mother
Last updated: 21 Jul 2010
Brief summary: I have 3 offspring: 2 have the inherited, neurological disabilty "Neurofibromatosis Type 1", as does their father. My daughter had congenital pseudarthrosis of the tibia and had after 5 years of unsuccessful bone surgery was a pioneer for the Ilizarov fra

Bridgend ( Wales / Cymru )

Apr 2007  male
Family type: single parent family
Siblings: 3
Disabled siblings: 0
Username: rainbow1975
Relationship: Mother
Other conditions: None

Last updated: 06 Jun 2013
Brief summary: My son 6yr son has neurofibromatosis and also has bowing of the (r) tibia bone I would like to contact parents with the same

Bromley ( London Boroughs )

Jan 2008  female
Family type: not given
Siblings: 2
Disabled siblings: 2
Username: sweetheart
Relationship: Female - Same Person
Other conditions: None

Last updated: 28 Jan 2008
Brief summary: I am 44 but look much younger and have had neurofibromatosis most of my life from the age of 14. I am a bubbly outgoing lady once I get to know someone, but find it difficult to make friends as I AM SHY TO BEGIN WITH, and some people shun me because of my

Buckinghamshire ( England )

May 2006  female
Family type: single parent family
Siblings: 2
Disabled siblings: 0
Username: flowerfairy
Relationship: Mother
Other conditions: Dyspraxia (237)

Last updated: 01 Oct 2015
Brief summary: Hi, I am a single mum of 3, my youngest is diagnosed with NF1 and Dyspraxia. Life is full of challenges, it certainly is a mixed bag of emotions. Feel isolated at times so would be great to speak to other parents who have children with this condition

Jun 2005  female
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: moomin30
Relationship: Mother
Other conditions: None

Last updated: 12 Nov 2008
Brief summary: My daughter is 3 she has numerous cafe au lait and a plexi on her left hand and arm, she is due her first operation in 2009. I would like to make contact with parents of other pre-schoolers as I am nervous about this huge step in her life.

Cheshire East ( North West )

Jan 2001  male
Family type: single parent family
Siblings: 1
Disabled siblings: 0
Username: kitten
Relationship: Mother
Other conditions: Optic Glioma (6)

Last updated: 29 Apr 2007
Brief summary: hello i am sarah my son who is 5 has neurofibromatosis 1 he has a learning diffuctlies and has an optic glioma tumor which is affecting his eye sight.would like to meet someone have a chat or write letters,

Mar 2002  male
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: wotsername
Relationship: Mother
Other conditions: None

Last updated: 23 Sep 2006
Brief summary: I have N.F 1 and my Son is showing those oh so familiar cafe au lait spots but is yet to be confirmed with a diagnois but I'm convinced he has inherited it. Looking to talk, laugh and (sometimes) cry with other Mums & Dads. My Son is 4 1/2 and ha

City of London ( London Boroughs )

Jan 1981  female
Family type: single parent family
Siblings: 3
Disabled siblings: 0
Username: authoress09
Relationship: Female - Same Person
Other conditions: None

Last updated: 22 Nov 2011
Brief summary: I'm just a girl who wants to meet, in person, other NF1 sufferers.... I don't have a lot of RL friends and am constantly fed up od ignorant people staring at me. Lately though I've not cared and started wearing make up. Am looking for decent, g

City of Westminster ( London Boroughs )

Sep 1977  male
Family type: not given
Siblings: 0
Disabled siblings: 0
Username: EWK1977
Relationship: Male - Same Person
Other conditions: None

Last updated: 13 Nov 2009
Brief summary: I was diagnosed at 14 with NF1. Just looking to have a chat with other people with NF.

Sep 1977  male
Family type: not given
Siblings: 0
Disabled siblings: 0
Username: Gruffy_uk
Relationship: Male - Same Person
Other conditions: None

Last updated: 04 Jan 2008
Brief summary: Have Neurofibromatosis I - diagnosed at around 14

Jan 1981  not given
Family type: single parent family
Siblings: 1
Disabled siblings: 0
Username: Matts girl
Relationship: Female Affected Adult
Other conditions: None

Last updated: 21 Dec 2005
Brief summary: I am a 25 (my bday is soon) yr old writer from London who is desparate to meet new people with the same condition. I am also interested in meeting up and talking about our experinces.

Croydon ( London Boroughs )

Dec 2010  male
Family type: single parent family
Siblings: 1
Disabled siblings: 1
Username: Angel21
Relationship: Mother
Other conditions: None

Last updated: 19 Jul 2012
Brief summary: Hello, I have an 19 month old son with NF1, would like to get in contact and meet people with NF...

Dec 2010  male
Family type: single parent family
Siblings: 1
Disabled siblings: 2
Username: Angelica21
Relationship: Mother
Other conditions: None

Last updated: 18 Jun 2013
Brief summary: My son has NF1 and would like to meet people

Derby City ( Derbyshire )

Nov 2008  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: LeosMum91
Relationship: Mother
Other conditions: None

Last updated: 17 Sep 2012
Brief summary: Hi there my name's Lauren.I have 2 children, my eldest who is nearly 4, has Neurofibromatosis. I am looking for parents in the East Midlands ( or further ) to either meet up, email or write to.

Derbyshire ( East Midlands )

May 1988  male
Family type: not given
Siblings: 0
Disabled siblings: 0
Username: phillg546
Relationship: Male - Same Person
Other conditions: None

Last updated: 24 Oct 2014
Brief summary: hi im looking for people or people with children that have nf to talk to. i have nf type 1 and have 2 children both have nf aswell

Nov 1975  male
Family type: two parent family
Siblings: 0
Disabled siblings: 1
Username: swadlincote
Relationship: Male
Other conditions: None

Last updated: 21 Apr 2013
Brief summary: hi i nick i have neurofibromatosis type 1 and i have a daughter who we think has nf1 too, i live in swadlincote south derbyshire. im looking to meet people in the derbyshire to make friends and meet others with nf or other parents whos kids have nf.

Durham ( North East Region )

Apr 2003  female
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: Claudia 74
Relationship: Mother
Other conditions: None

Last updated: 07 Jun 2008
Brief summary: My daughter is 5 and currently in reception class. She needs one-to-one support with writing, speech, gross motor skills and concentration. Would love to swap chat, advice and support from anyone searching for a glimpse of light in the twilight zone that

Oct 2009  female
Family type: two parent family
Siblings: 4
Disabled siblings: 0
Username: yelddd
Relationship: Mother
Other conditions: None

Last updated: 29 Jul 2012
Brief summary: My daughter has NF1,I would like to contact other parents.She is two nad a half years old and is covered in cafe au lait marks.there are tiny bumps appearing allover her body.we desperately need to talk to other parents.we live in durham.thanks.

East Sussex ( South East )

May 2011  male
Family type: not given
Siblings: 1
Disabled siblings: 0
Username: bunny76
Relationship: Female Family Member
Other conditions: None

Last updated: 16 Feb 2015
Brief summary: Hi I'm 38 with NF1 and I have a son who is almost 4 he too has it.

Jan 1997  female
Family type: single parent family
Siblings: 1
Disabled siblings: 0
Username: pumpkin66
Relationship: Mother
Other conditions: None

Last updated: 09 Feb 2012
Brief summary: Hello My 14 year old daughter has NF1. Although she has a plexiform in her sciatic nerve which causes great pain, she doesnt let it stop her do judo, horse ride and even ski. she would love to meet other children in our area with NF.

England

Jan 1996  female
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: babsey
Relationship: Mother
Last updated: 08 May 2007
Brief summary: rebecca is partley sighted and as nf1 as a resul ofthis she as learning difficulties groth defisancey, earley puberty and scoriousis

May 1966  not given
Family type: two parent family
Siblings: 0
Disabled siblings: 3
Username: bntbon
Relationship: Female Affected Adult
Other conditions: None

Last updated: 09 Feb 2005
Brief summary: i suffer with nf1 and my two children also have same condition we live in london

Nov 2001  male
Family type: single parent family
Siblings: 1
Disabled siblings: 0
Username: cherry1979
Relationship: Mother
Last updated: 03 Jun 2009
Brief summary: my son who is 7 has neurofibromatosis 1 he has a optic glioma tumer on his optic nerve which is affecting his sight in both eye's more so in his right one tho and a shunt to drain fluid off his brain and some neurofibroma's on his body and has load's o

Apr 1987  female
Family type: two parent family
Siblings: 3
Disabled siblings: 0
Username: clab1987
Relationship: Female - Same Person
Other conditions: None

Last updated: 13 Apr 2016
Brief summary: I was born with nf1 and even at the age of 28 I still do bot know much about NF. I have many marks on my skin and seem to be getting morr as the years go on

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