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486 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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22q11 Deletion syndromes

Jan 2003  male
Family type: not given
Siblings: 0
Disabled siblings: 0
Username: samnkaz
Relationship: Mother
Location: Dorset
Other conditions: None

Last updated: 19 Aug 2008
Brief summary: My son was diagnosed with 22q11 at the beginning of this year.

3rd Nerve Palsy of the Eye

Dec 2001  female
Family type: two parent family
Siblings: 1
Disabled siblings: 1
Username: oceanblue
Relationship: Mother
Location: Gloucestershire
Last updated: 26 Apr 2012
Brief summary: has dyslexia,dysbraxia,dyscacula and attention deficite along with visual auditory something we have only just getting diagnosed she has issues with retaining details, we need her to gett more help she has IEP BUT NEEDS SO MUCH MORE.

Aarskog syndrome

May 2006  male
Family type: single parent family
Siblings: 1
Disabled siblings: 0
Username: cornish maid
Relationship: Mother
Location: Cornwall
Other conditions: None

Last updated: 22 May 2009
Brief summary: My son is almost 3,and has recently been diagnosed with Aarskog syndrome.He is funny and supercute.Would like to contact people in the same position,as only YOU know what its like,for the child/parent/family.

Mar 2007  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: mad mutts
Relationship: Mother
Location: Wiltshire
Other conditions: None

Last updated: 12 Jan 2008
Brief summary: My son is nearly 10 months old and has been diagnosed with probable Aarskog Syndrome, they also think that his sister may also be mildly affected. I would like to make contact with other people who are also dealing with this disease and find out more of

Abdominal Epilepsy

Sep 2006  female
Family type: two parent family
Siblings: 1
Disabled siblings: 1
Username: thesnowman1
Relationship: Mother
Location: South West
Other conditions: None

Last updated: 19 Aug 2011
Brief summary: trying to get help in geting a quicker conformation and information on stomach epilepsy

Abdominal Migraine

Jan 2001  female
Family type: two parent family
Siblings: 2
Disabled siblings: 0
Username: Greenwaygal
Relationship: Mother
Location: Gloucestershire
Other conditions: None

Last updated: 10 Aug 2016
Brief summary: Mother of 15 year old daughter with possible abdominal migraine that is definitely getting worse over time

Achondroplasia

Aug 2006  male
Family type: two parent family
Siblings: 2
Disabled siblings: 0
Username: Blue waters
Relationship: Mother
Location: Devon
Last updated: 17 Oct 2012
Brief summary: Achondroplasia with associated hydrocephalus. Managed with a full vp shunt. Been stable for three years now aged 6.

Mar 2003  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: jelaine
Relationship: Mother
Location: Cornwall
Other conditions: None

Last updated: 24 Aug 2005
Brief summary: Mum to my beautiful (and cute) little boy who has achon. He has totally exceeded any of our expectations and continues to make us smile every day.

Nov 2006  male
Family type: two parent family
Siblings: 1
Disabled siblings: 1
Username: Slinky
Relationship: Mother
Location: Devon
Other conditions: None

Last updated: 15 May 2007
Brief summary: My six month old son has Achondroplasia

Jan 2014  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: TatieTarter
Relationship: Mother
Location: South West
Other conditions: None

Last updated: 21 Dec 2013
Brief summary: I am 34 weeks pregnant with our son and have just discovered that he had Achondroplasia. We are at the beginning of this journey but seek to find support and information from others.

May 2016  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: wiggy1972
Relationship: Father
Location: South West
Other conditions: None

Last updated: 04 Jan 2017
Brief summary: We have an 8month old son Oliver who has Achondroplasia,he has been in hospital since dec 24th with bronchiolitis

Mar 2004  male
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: Xandmum
Relationship: Mother
Location: Devon
Other conditions: None

Last updated: 10 Jun 2006
Brief summary: Mum to a gorgeous boy with achon.

Acrodermatitis Enteropathica

May 2008  male
Family type: single parent family
Siblings: 0
Disabled siblings: 0
Username: amylara
Relationship: Mother
Location: Gloucestershire
Other conditions: None

Last updated: 25 Jan 2012
Brief summary: My son was diagnosed at just 13 weeks old with Acrodermatitis Enteropathica.

Acute Disseminated Encephalomyelitis

Jul 1967  female
Family type: two parent family
Siblings: 0
Disabled siblings: 0
Username: Howie123
Relationship: Male Family Member
Location: Wiltshire
Other conditions: None

Last updated: 14 Feb 2011

Acute Pityriasis Lichenoides

Mar 2002  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: Geiamama
Relationship: Mother
Location: Gloucestershire
Other conditions: None

Last updated: 11 Jan 2009
Brief summary: My son has Pityriasis Lichenoides and he is finding it very hard to deal with.

Dec 1963  female
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: harveywoo
Relationship: Female - Same Person
Location: Gloucestershire
Other conditions: None

Last updated: 27 May 2009
Brief summary: I have a condition called pityriasis lichenoides which i have had for over three years.

Addison disease

Aug 2002  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: marymay
Relationship: Mother
Location: Somerset
Other conditions:
Brittle Asthma (8)

Last updated: 18 Jul 2015
Brief summary: My son has had severe asthma since a baby and also has dyspraxia, sensory processing disorder and suffers from anxiety. He now also has adrenal insufficiency due to the number of steroids he has taken in his life

Agenesis of the Corpus Callosum

Dec 2013  female
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: cornishmaid
Relationship: Mother
Location: Cornwall
Other conditions: None

Last updated: 06 Aug 2014
Brief summary: I'm 21 year old mum to two kids in Cornwall with a 2 year old boy and a 9 month old daughter my daughter has complete agnesis of the corpus callosum a problem was picked up during a 20 week scan after various tests and MRI scans she was diagnosed!

Jan 2003  female
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: missnice22
Relationship: Mother
Location: Wiltshire
Other conditions: None

Last updated: 29 Nov 2005
Brief summary: hi im a mum of a toddler who has an absent corpus callosum my name is kelly and kelis got diagnosed when i was pregnant with her, please contact me as we are still learning about the conition

May 1997  female
Family type: single parent family
Siblings: 1
Disabled siblings: 0
Username: princess9
Relationship: Mother
Location: Somerset
Other conditions: None

Last updated: 02 Oct 2006
Brief summary: my daughter recently had dianosis of ACC. No speech, behaviour difficulties similar to autism and poor coordination. Need to talk to others

Jul 2005  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: young mum
Relationship: Mother
Location: Gloucestershire
Other conditions: None

Last updated: 05 Mar 2007
Brief summary: My son had a lot of respiratory problems soon after birth resulting in a collapsed lung. Later he was diagnosed with saccades (eye problems) then ACC and a smaller cerabellum. He suffers from cronic constipation, has feeding difficulties and very low mus

Albright Hereditary Osteodystrophy

Sep 1978  female
Family type: single parent family
Siblings: 2
Disabled siblings: 0
Username: sue395
Relationship: Mother
Location: Wiltshire
Other conditions: None

Last updated: 25 Aug 2004
Brief summary: Mother of daughter with pseudopseudohypoparathyroidism would like to know if anyone else has any experience of someone with this condition and how they have coped with it

Alexander disease

Jan 2002  male
Family type: two parent family
Siblings: 1
Disabled siblings: 0
Username: Stamford
Relationship: Mother
Location: Devon
Other conditions:
Leukodystrophy (21)

Last updated: 02 Jun 2005
Brief summary: Hi My name is Rachel and I was mum to Thomas who sadly passed away in June 2004. He was diagnosed with Alexanders disease which is a rare condition so I would be happy to share my experience with anyone in the same boat.

Allergies

Jul 2000  female
Family type: single parent family
Siblings: 0
Disabled siblings: 0
Username: tiredout
Relationship: Mother
Location: Devon
Other conditions: Anaphylaxis (6)

Last updated: 09 Jan 2007
Brief summary: My daughter has severe food allergies. We carry an Epipen and she has nearly died on several occasions. Following hosiptal admissions her immune system is depleted and we can spend weeks treating life threatening infections un-related to the original alle

Alpha 1 - Antitrypsin Deficiency (Paediatric)

May 2002  female
Family type: two parent family
Siblings: 2
Disabled siblings: 0
Username: abc123mum
Relationship: Mother
Location: Dorset
Other conditions: Liver disease (2)

Last updated: 11 Nov 2007
Brief summary: Our daughter was diagnosed with alpha-1 anti-trypsin deficiency syndrome at 6 weeks old and at the time, I felt so alone and unsure of the future. She is 5 now and her health is now stable. She still has to have 6 monthly blood tests and checks at Kings

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