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Supporting families
affected by the extremely rare neurocutaneous disorder
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Hypomelanosis
of Ito
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Also known as Incontinentia Pigmenti Achromians,
Ito's Syndrome
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or HMI (Pigmentary Mosaicism)
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The definition of HI is:
A neurocutaneous syndrome of streaky, patchy,
whorl-like, or linear macular hypopigmentation of the skin, often
associated with seizures, developmental and intellectual retardation
and
other anomalies.
The symptoms of HI include:
Asymmetry of the body, patchy pigmentation which can occur on any
part of
the body, but not normally the palms, scalp or soles of the feet.
Gross
motor and psychomotor retardation, epilepsy, scoliosis, dental and
bone
anomalies, unusual ophthalmic features and kidney problems, amongst
others.
Diagnosis of HI
HI is a manifestation of an etiologically heterogeneous
group of disorders,
some of which are associated with genetically distinct cell lines.
This is a group of disorders with the common feature of increased
and/or
decreased pigmentation in a characteristic formation with swirling
patterns
around the trunk and linear patterns down the legs and arms. Dermatologists
call this pattern Blaschko's Lines. It is now known that this pattern
occurs when there are two populations of cells in the skin which
vary
because of a chromosome problem in one set of cells or a gene change.
When
skin cells are cultured an abnormal chromosome pattern is found
in one
population of cells in about one third of affected individuals.
The error
seems to occur after a child is conceived. The range of effects
varies
widely from almost no problems (other than the skin patterning)
to major
developmental problems. In those with more severe effects, seizures
are
common. Affected individuals may have asymmetry of growth on either
side of
the body.
Inheritance patterns
This is not an inherited disorder since the error occurs after conception
in one population of cells. Reports in older literature of familial
cases
are unconvincing. Pigmentary mosaicism should be differentiated
from the
X-linked condition of Incontinentia Pigmenti where the areas of
increased
pigment are preceded by blistering skin lesions.
Pre-natal diagnosis
This condition is not recurrent. Management in future pregnancies
should be
routine, although detailed scanning may provide added reassurance.
PLEASE NOTE HYPOMELANOSIS OF ITO IS NOT THE SAME SYNDROME AS INCONTINENTIA PIGMENTI (IP).
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WHAT IS HITS (UK)
HITS (UK) is a family support network which was specifically set up
by
families to support other families with this syndrome because no other
support group existed anywhere else in the world.
HITS (UK) aims to support families by letter, e-mail, telephone,
internet chat group, monthly "live" internet chats", 3 newsletters
per year and by
bringing families together at events to reduce the sense of isolation
often
felt.
Aim and Objectives
The Family Support Network's aim is:
To enrich the lives of families and children affected by Hypomelanosis
of
Ito by facilitating and encouraging communication and linking families
together, and by being a focal point offering verbal and written
support :
· To put families who have a common situation
or difficulty in touch
with each other to enable them to gain mutual support and friendship.
· To reduce the sense of isolation families and children
with
disabilities or special needs often feel.
· To liase with the medical profession to communicate the
group's
existence and to share medical information available to us.
· To have quarterly conference calls and to produce a quarterly
Newsletter.
· To organise an Annual or Bi-Annual Family Event.
· To promote the importance of the group and the need for
communication.
· To organise medical training awareness days in an attempt
to gain
earlier diagnosis.
Ignorance creates disillusion ? Awareness ends
confusion!
See HI
Brochure
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HITS (UK) Family Support
Network
National Contact and Co-ordinator - Sandra Field
33 Fernworthy Close
Torquay
Devon
TQ2 7JQ
Tel: 01803 401018
Chairperson and London Contact - Terri Grant
Tel: 07940 114943
tgrant@hitsuk.freeserve.co.uk
The support group offers:
Support by telephone and letter
Information on the disorder
Links with other similarly affected families and Yahoo Groups internet site discussion site and family days
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| The Ito Helpline is manned
most Tuesday evenings (UK Time only) from 7-9 p.m. - The helpline
is only manned at these times please do not call outside of these
hours.
All calls are treated in strictest confidence
Please call +44 020 8352 1824 (if all lines are busy you will hear
a
recorded message, please speak clearly leaving your details and
someone
will get back to you).
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MEMBERSHIP
Membership is open to all families in the UK and throughout the world
affected by HI.
Please contact Sandra Field at the above address or Terri Grant
at
tgrant@hitsuk.freeserve.co.uk
for further information relating to HI or HITS (UK).
We currently support families in the UK, Ireland, France,
Canada and Cyprus, the USA, New Zealand, India, Italy, Brazil, Malta,
Spain, Sweden,
Argentina, Beligum, Germany, Holland, Mexico, South Africa, Singapore and Turkey and Australia.
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http://www.cafamily.org.uk
http://groups.yahoo.com/group/hitsuk2001uk
http://www.youth-plus.org.uk
http:/www./ukcharityauction.org
http:/www.skincarecampaign.org
http:/www.ectodermaldysplasia.org
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| July 15th 2001 - 12-6
The Children of Ito Family Support Day in London
Our first event the "Children of Ito" Family Support Day
takes place on
Sunday July 15th 2001 in London.
We will have speakers on managing epilepsy and managing scoliosis,
childrens' entertainers, literature, raffles, and an open discussion
forum
for parents. Photographs of the day to follow:
Committee Meeting - Committee meetings are held on the first Saturday
of October each year from 12 noon to 3.30 p.m. in London
Our committee meeting with some of our medical advisers will take
place in
London on Saturday October 6th 2001 from 12 noon.
Annual General Meeting - Our Annual General Meetings are held on
the first Saturday of April each year from 12 noon to 3.30 p.m.
in London - Places are limited
The next Family Event - will be on September
11th in London - for more details please email tgrant@hitsuk.freeserve.co.uk
2006 - July 8th 2006, Children of Ito Family Day 12-6 in North London, with a speaker on Autism. Committee meeting 10.30 - 11.30 July 8th.
Future Events to be confirmed
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To receive copies of our newsletters please e-mail Terri Grant
at tgrant@hitsuk.freeserve.co.uk
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| Medical Advisers to the
Board include:
Advisers to the Board
Dr Celia Moss, DM, FRCP, MRCPCH (Consultant Paediatric Dermatologist),
Birmingham Children's Hospital
Professor Dian Donnai, (Consultant Clinical Geneticist), Manchester
Hospital
Dr Richard Alan Lewis, MD, MS, (Professor, Departments of Ophthalmology,
Medicine, Pediatrics and Molecular and Human Genetics)
Baylor College of Medicine, Houston, Texas
Dr Jill Adams, Torbay Hospital
Marian Hankey, Physiotherapist
Dr Philip Beales, Molecular and Medical Genetics, Guy's Hospital,
London
Dr Richard Appleton, RLCH NHS Trust - Alder Hey.
(See Ito's
information for parents)
Other Associates to the Board
Professor Adrian Woolf MA MD FRCPCH, Head of the Nephro-Urology
Unit,- Great Ormond Street Hospital, London
Dr. Martino Ruggieri - Senior Lecturer of Paediatric Neurology,
Catania, Sicily
Dr. Jean-Philippe Lacour, Service de Dermatologie, Hopital Archet
Nice, France
Dr Saleem Taibjee, Birmingham Children's Hospital.
Previous Sponsors Include:
Ernst & Young
National Westminster Bank
The Lloyd's TSB Foundation
The Roald Dahl Foundation
The Cheeki-Monki Company
Daimler Chrysler UK Limited
River Metals Recycling LLC - USA
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