Download genetics guide - Ectodermal Dysplasia Society

Volume 2
Issue 3
April 2002
ECTODERMAL DYSPLASIA SOCIETY
Contact: Mrs. Diana Perry, 108 Charlton Lane, Cheltenham, Glos. GL53 9EA England. Tel: 01242 261332
Registered Charity No. 1089135
http://www.ectodermaldysplasia.org
Email: [email protected]
GENETICS GUIDE
Cells, Proteins and Genes
Every part of your body is made up of millions
of cells. We all began as a single cell, the
fertilised egg, that divided into two daughter
cells which in turn divided to give four cells and
so on. Through this amazing process of
embryological development supported by the
nurturing environment of our mother's womb,
most of us ended up the right shape with all our
organs in place and functioning as they should.
The cells of the different tissues of the body
have their own special job to do, their structure
and behaviour being appropriate to that
particular function. But what accounts for the
different properties of specialised cells?
Basically these differences stem from the
varied combination of proteins which make up
each cell and are needed to carry out the cell's
work. Cells are the basic building blocks of the
body and proteins, the basic building blocks of
the cell.
The action of the genes determines which
proteins are produced in what cells. Genes
provide the instructions for the manufacture of
proteins by the cell. With very few exceptions,
‘EDlines’ in this Issue:
Genetics Guide
News & Views
John’s Story
From the Trustees
Parental Leave Update
And Finally …
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p4
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each cell has a full set of genes packaged into
46 tiny structures called chromosomes (Fig. 1).
Not all the genes are active in any one cell, just
those appropriate to that cell type and the
functions it must perform. Our genes not only
guide our development from fertilised egg to
fully grown adult, but go on providing the
information that is needed for everyday
maintenance and functioning of our bodies.
For this reason an inherited genetic fault can
cause errors of development that are manifest
at birth or soon after, or cause a specific
malfunction of the body.
Inheritance
It takes two to make a baby, so chromosomes,
the genes they carry, come in pairs; one set of
23 from mother and one from father, making 46
in total (Fig.2). It is the chromosomes in the
egg and sperm that carry the genetic
information from one generation to the next. In
the formation of sperm, one of each
chromosome pair is placed into the developing
sperm, and likewise for the egg, so each has a
single set of 23 chromosomes. When the egg
and sperm come together at fertilisation, the
proper number of 46 is restored, ready for the
baby's development. Sometimes the process
that leads to just one of the chromosome pair
being placed in the egg or sperm goes wrong
and the resulting child has 47 or 45
chromosomes. The commonest chromosomal
abnormality of this type is Down's syndrome,
usually due to the egg having both copies of
chromosome 21 so the affected child ends up
with three. This overdose of gene action from
chromosome 21 disturbs the genetic control of
development.
Twenty-two of the chromosomes pairs are the
same in males and females, but the 23rd pair is
different. The chromosome pairs that are the
same in both sexes, numbered 1 to 22, are
called autosomes to distinguish them from the
sex chromosome pair, X and Y. Females have
two X-chromosomes, whilst males have one X
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and one Y chromosome. This means that
sperm are of two types with respect to their
chromosomes; half will have an X chromosome
and half a Y chromosome. If an X-carrying
sperm fertilises the egg, the baby will be a girl,
whilst a Y-carrying sperm makes a boy. The
father determines the sex of the baby.
Understanding how the chromosomes behave
during egg and sperm formation has allowed
us to explain the simplest patterns of
inheritance of a character, or disease, as
originally observed by Gregor Mendel in his
study of peas over a century ago. There are
three simple patterns of inheritance. The first
two involve one of the pairs of genes on
chromosomes 1 to 22 and are referred to as
autosomal dominant and autosomal recessive
inheritance. The third, sex-linked inheritance,
involves one of the genes on the Xchromosome and for this reason is more
correctly called X-linked inheritance.
These three 'Mendelian' patterns of inheritance
are illustrated in Fig-3 by way of simple
chromosome diagrams depicting a single
chromosome pair and just one gene upon it.
The top diagram shows that in autosomal
dominant
inheritance,
as
occurs
in
Huntington's Disease or Neurofibromatosis,
there is inheritance from one parent. An
affected individual has a 50-50 chance of
passing it on at each conception.
Autosomal recessive inheritance, depicted in
the middle diagram, occurs in Cystic Fibrosis or
Thalassaemia, and is inheritance from both
parents. Only if both pass on a faulty gene can
the child be affected. Most often both parents
are healthy carriers, and therefore unlikely to
be aware that they face a 1 in 4, or 25%,
chance of an affected child with each
pregnancy. It is important to appreciate that
chance has no memory; it is 50% (autosomal
dominant) or 25% (autosomal recessive) with
each and every pregnancy, regardless of what
happened with earlier pregnancies.
Recognition that many genes, important for a
variety of tissue functions, are carried on the X
chromosome, whilst the Y chromosome only
carries the gene for maleness and a few
others, has allowed us to explain X-linked
inheritance, as depicted in the bottom diagram
which occurs in Duchenne Muscular Dystrophy
or Haemophilia. In this type of inheritance only
carrier female has a 50% chance of being
affected and a girl has a 50% chance of being
a carrier, like her mother. All sons of an
affected male will be unaffected (they get dad's
Y chromosome), but all his daughters will be
carriers (they get dad's X-chromosome).
Statistical probabilities are all very well when
being reassured by comfortingly low odds
(often the case after genetic counselling), but it
is not much help to those facing a high chance
of an affected child. People often want to know
whether they are a carrier or not; whether the
developing baby is affected or not. All else is
just agonising uncertainty. It has only been
through the advances of molecular genetics
that most carrier testing and early prenatal
diagnosis have become possible.
Looking Ahead
Advances in human genetics are expected to
benefit us in many ways. Most direct, is the
help that can be offered to individuals and
families threatened by serious inherited
disease.
Improved understanding of the
molecular pathology will, in the long term, lead
to better treatments including gene therapy.
More indirect, but of great potential benefit, is
our ability to understand how genetic variation
interacts with environmental factors to cause
common diseases, and thereby refine
therapeutic interventions.
The special nature of genetic information
highlights certain ethical issues. This is an
additional reason why scientists and clinicians
should explain what they are doing and ensure
they carry the public with them as they
translate research findings into new diagnostic
tests and treatments. Another reason for an
educational drive to explain genetics is central
to an understanding of biology, and given
enough insight most people find genetics
fascinating and it is a privilege to be living at
such an exciting time in the development of
human genetics.
boys are affected but the disease can be
passed on by unsuspecting female carriers.
They are usually unaffected (or just mildly so)
because, unlike the affected male, she has a
second X chromosome which carries a working
copy of the gene that can compensate for the
malfunction of the faulty gene. A boy born to a
Thanks to the Progress Educational Trust
for permission to reproduce this extract
from The Progress Guide to Genetics
(October 1996)
www.progress.org.uk ◘
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Can you help?
Two of our members have recently
requested information on ‘skin
blistering’. They mention little white
blistering spots, mainly on the face,
which appear to be filled with watery
fluid. Has anyone else experienced
similar problems? ◘
Will this help?
We have had a report from a
younger member about a sun cream
that she has come across which she
says really works for her. The ‘ROC
total sun-block’ is prescribed by her
doctor and has enabled her to enjoy
holidays in Salou and Teneriffe.
Have any other members had joy
with this sun-block? ◘
The use of a product name does not constitute a
recommendation or endorsement by The Society.
Thanks for your help
We are very grateful to Wendy who
so faithfully stuffs, labels and sticks
postage stamps on envelopes for our
Newsletter
mailings.
Thanks,
Wendy. ◘
Suck & Swallow advice
Diana Perry
Who says you can’t teach your
granny to suck eggs! You can, and
she can ……
When Jack came home desperately
trying to keep his upper dentures in
place I turned to my Mum and asked
her “how do you keep your teeth in?”
This is something Mum never thinks
about as they ‘just stay in’, but when
given the challenge (my Mum likes a
challenge) she went away to work out
‘how do I keep my dentures in?’
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After much deliberation she came back, sat Jack
down and said “put your teeth in your mouth (the
right way up silly!), hold them up with your
tongue, put one thumb on one side of the
dentures and the other thumb on the other side,
push up, suck and then swallow” bingo – they
stayed in. Apparently it is the ‘swallow’ action
that fixes them in place.
Thank you so much for sharing this with us Mum,
especially as I know you don’t like people to know
you have dentures, but heigh ho, there’s only 250
members in ED that now know! ◘
Carers Week, 10-16 June 2002
There are 12 key initiatives taking place during
Carers week this year.
These include free
holidays for 1,000 carers and the publication of
Carers Week leaflets, enabling carers to send
personal messages to Local Authorities explaining
why services are so crucial to their quality of
life. For more information or for a carers week
pack contact Paul Matz, Carers Week Manager on
020 7566 7619 or e-mail: [email protected] ◘
Jeans for Genes
The next Jeans for Genes day is 4 October
2002.
Funding for the recently announced
successful gene therapy for Severe Combined
Immune Deficiency (X-SCID) was provided by
Jeans for Genes. It is hoped that successful
gene therapy for X-linked Chronic Granulomatous
Disorder (CGD) will follow.
The Jeans for Genes original charities are the
Great Ormond Street Charity, the Society for
Mucopolysaccharide Diseases, the Chronic
Granulomatous Disorder Research Trust and the
Primary Immunodeficiency Association.
The
2002 Jean for Genes Campaign will also benefit
four other charities: The Haemophilia Society,
The Jennifer Trust for Spinal Muscular Atrophy,
the AT Society and Alstrom Syndrome UK. For
more information visit the Jeans for Genes
website at www.jeansforgenes.org.uk ◘
John’s Story
The following article is based on a conversation that Dr. Angus Clarke had with John Cuningham as
part of a Wellcome Trust-funded research project into life with Ectodermal Dysplasia.
John Cuningham, now 75, tells about his life.
I was born on 26th January 1927.
I’ve always had thin hair, never had any eyebrows
or eyelashes, and no bodily hair at all on my legs,
and only a few bits under my arms, and I knew I
didn’t have proper teeth. They never came
through. I just had 2 fangs at the front –
dreadful – and two at each side at the back. Six
in all at the top, and none at the bottom.
I went to a little Prep School, a Kindergarten
School, and they sent me to a gym where they
tried to make me climb ropes and all the parallel
bars and jump over horses, and I couldn’t do it. I
used to fall down and they all thought I was
fooling around. I left that school.
I then started getting terrible eczema all around
my face, huge great scabs, and it went on for
years. My parents took me to see specialist
after specialist (there was no National Health
Service in those days) who gave me various
ointments and creams.
When I was about 8, they fitted me with a plate
of false teeth, and I went to a Junior School,
which was about two miles away from where we
lived. I used to go on the tram. I was teased,
and called ‘baldy’, all the usual things children do.
They tried to make me do sports and other
things, but I couldn’t, I used to fall down, just
pass out. In the summer, the heat used to
affect me terribly, and I just used to flake out.
Then one year when I was 8 or 9, I was coming
home from school and went to get on a bus but
fell off into the street. The conductor thought
I was fooling around. After this had happened
two or three days running, a Doctor came round
who said I had ‘polyneuritis’ and they encased me,
as I am today, in splints. My hands were put in
big wooden splints and bandaged over a grip. I
lay there for about seven months, and I was in a
wheelchair. At the time they thought it might be
polio and there was talk of me going into an iron
lung. As I got better, I continued to suffer with
the heat.
I used to be taken out to places and when I
couldn’t make it, I used to drag myself along the
street and flake out under a tree in someone’s
garden. No-one took much notice of this, they
just said “pull yourself together” or something
similar.
As I got better I went to Senior School, which
was four miles away, until I was 15. I used to
walk downhill to school in the morning, but coming
home, particularly in the summer, was a
nightmare. I can remember crawling along roads
to get back to the bus, and I kept telling people
that I couldn’t cope with the heat.
One year we went to Eastbourne for a holiday.
We had to get a train to London first, and then
change trains for Eastbourne. It was one of the
hottest days of the year, in the middle of the
war, and there were no seats at all. I had to
stand up in the corridor, until I suddenly flaked
out. Just like that. I couldn’t take the heat.
At the age of about 12, I started getting very
bad pains and again I was put into callipers, hand
callipers, and I had rheumatic fever and, one of
the most horrific things that was done, was to
put me into an iron bed in the house. My
bedroom was moved downstairs. I can remember
my mother and an assistant carrying me out into
the garden on a blazing hot day with the Doctor’s
guidance, and they covered me with blanket after
blanket. Then they put hot water bottles all
down the side of me and left me in the blazing
sun to try to make me sweat. I nearly died, it
was as simple as that.
This happened for two or three days running and
when they realised that I was nearly dying, they
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resorted to giving me bee-string injections to
get the rheumatism out of me.
80°F’s, I knew I would be paralysed. I still dread
hot weather.
I was made to wear heavy Wolsey jerseys and
vests and pants and hot woollen socks, even in
the summer, and it always affected my feet. I
couldn’t play games, and then they took me to tap
dancing lessons to try to make my feet work.
One day I was in the middle of Witney,
Oxfordshire and I collapsed with the heat,
literally. I saw a pub across the green – it was
about 2.30 pm – and I crawled there and asked
the Landlord if he had any rooms. He didn’t have
any rooms, but he let me lie down on his stone
stab floor, and there I lay for a couple of hours
until I felt better. Another time I was on my
way to do a job at Hayling Island, but never made
it. I got to a motel in Basingstoke and stayed
there the night. Yet another time I was in
London at Shepherd’s Bush on a steaming hot
night, and I lay on the pavement outside just not
knowing what to do. People just passed me by. I
just did not know where to put myself, and I had
no-one to call on. There were many episodes like
that. You just don’t know where to put yourself.
I left school in 1945 and was drafted into the
Civil Service as I failed the army test. It was
the end of the war, and all young men had to be
drafted. I was so conscious of having no hair,
that I went round everywhere wearing a hat,
even indoors. People were always asking me when
I was going to take off my hat.
As my jaw got bigger I had a large set of teeth
made, but I was born looking like an “old man”.
The rheumatic fever also made my hair fall out.
To this day people say: “you’ve never changed”.
I’ve always looked old. In fact, I was taken for
my mother’s husband several times.
I stayed in the Civil Service, took exams and
became an Established Civil Servant, and then an
Accounts Executive. It was lucky being in the
Civil Service because I could take annual leave in
half and odd days which meant that when it got
too hot or we had a heat wave, at one o’clock I
could just leave and go home and lie on the stone
floor to cool down.
Then my father died. I was 31 at the time. My
parents had been told that I wouldn’t live beyond
30 and I just thought: “I can’t go on like this.
I’m 31 and I’ve passed the 30 mark”. So I just
packed it all in. One New Year’s Eve I walked out
of a job with a pension and everything and went
into the Entertainment business.
Initially with a couple of friends I set up on my
own, which meant I could take time off in the
summers when it got too hot. I did this job for
25 years, and in the summers I had to go home
when it was hot and take all my clothes off and
lie on the floor to cool down. I would dread
seeing the weather forecast if the temperature
was over 75°F, and when it would get into the
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The heat always affected me from my feet first.
My feet were the most uncomfortable and I
always wore flip-flops, even with my business
suit! It was the only way I could work.
I had every illness – chicken pox; measles;
whooping cough, with asthma as a result;
hayfever; pneumonia; and I had dyslexia. Various
things happened to my nose. I had a perforated
nasal septum and I had polypus, which I had
taken out.
When I was about 32, I was so fed up with
people remarking about my “fangs” that I went to
a Dentist who said he could take them out. Of
course, I should have been sent to a hospital, but
he yanked them out there and then, pushed a
plate into the bleeding gums, and put me back out
on the street. I nearly passed out. A gap was
put in the plate so that people wouldn’t notice too
much, but my tongue kept catching in the gap
and, to this day, I still have the gap and a lump
there.
Then my mother became ill and later died, and
she had been in hospital for 7 months.
I was
just getting over it when my whole world
collapsed. I was going up the road one day when
suddenly my leg gave out. This happened two or
three times and when I went to my Doctor, he
referred me to the mineral water hospital where
I was told it was post-polio. I had always
believed that I had polyneuritis, not polio. The
doctors I saw weren’t even born when the polio
epidemic was around but I couldn’t argue with
the medical profession. I had no records to say
that I had polyneuritis and they all, to this day,
say that I had polio.
I was put back into leg callipers over 11 years
ago, and had to give up Business. I also moved
into a flat because the house I was living in
wasn’t suitable as it had no central heating or
anything. Then three years ago I moved into a
retirement flat. Now I’m alright and when the
heat comes on, I just turn on the fan and lie on
the floor. I’ve also got a humidifier.
However, when I tell people, and I have spoken to
doctors, nurses, etc., no-one has ever heard of
Ectodermal Dysplasia, and that’s what my whole
life has been. No-one knowing.
much saliva. Much of the stuff I eat now tastes
bland.
I think the secret is to tell younger people what
it was like for us. For instance, once I bought a
wig, which I was never comfortable in as it didn’t
look right and was too hot, but when people saw
me they used to laugh. You see, they’d got so
used to seeing me without hair that I looked
funny with hair.
I suppose the younger days and teenage years
were the hardest. Besides being ill with the
heat, there was the teasing. It was murder, but
all children do it. When I was an adult, I used to
go to dances and I was always the one left sitting
out because I wasn’t attractive enough for a
young lady. I suppose that was one of the
reasons why I’ve never married, and I also felt I
never wanted children to go through what I’ve
been through. That has always been in the back
of my mind.
I have found that warm water, in fact anything
to do with water and heat, starts me off. I
always have a tepid bath. I can’t stand to have a
shower. But I only have a five-minutes bath –
any longer is difficult. If I get the water too
hot, I’ve got either no feeling at all, or I
suddenly feel too hot. When I’ve got no feeling I
don’t know if, for example I was in scalding
water, that I would know that it was scalding,
except that I would look down and see that my
feet were very red.
I belong to a family where no-one else appears to
have ED. My sister has never had ED and she
has 6 children and 17 grandchildren, none who
have anything like me. I’ve asked my cousins and
my father’s family, and none of them have
anything like ED. But there were 2 children in
my father’s family who died at birth, but that
was way back in the 1800’s.
I go to the hospital twice a year and am
monitored. I’m fitted out with smart new splints
and am given helpful aids.
You are probably asking “How did I find the ED
Society after so many years?” ……… A remark by
a Medical Consultant, who I had informed that I
couldn’t sweat, said “you wouldn’t be alive if you
couldn’t sweat”, and this made me determined to
find out. This was in 2001! A newspaper article
on rare illnesses started me writing to various
groups and subsequently I found Diana Perry and
the Ectodermal Dysplasia Society. She in turn
put me in touch with Dr Angus Clarke who I met
and “poured my heart out” to (some of which you
have just read); he was the first person who
believed me and didn’t think I was mad – I found
a name to a condition and I cannot put into
enough words the relief I found, after a lifetime
I’ve got problems with my nose. When I was a
teenager I used to use a nasal douche, a little
thing filled with salt water, to clear away the
crusting. Now various new things have come onto
the market, like saline drops and water drops. I
sometimes have problems with crusting, and when
I clear the crusts away, my nose starts to bleed,
but this doesn’t happen very often. I’ve never
had a very good sense of smell and my taste has
always been rather limited. I’ve never had very
I know of no-one on my mother’s side suffering
with the heat, but sadly they are no longer alive.
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of not knowing. These two people believed me
and this was the best gift I have ever had – no
amount of words can express my thanks to them.
In the war years (1940s) there were no support
groups, very few doctors – as many were fighting
in the war – no National Health Service and my
parents did all they could to help me. I wish they
were all alive to know. My own doctors did all
they could to help me cope with what was then an
unknown cause. To young people who suffer from
unknown maladies, I say – keep fighting and
asking questions.
At the Trustees meeting of 17 November 2001,
it was decided that the charity should have an
annual membership fee to help towards the
running costs of the Society.
It has been decided to charge £1 for Full
Membership (over 18, with full voting rights)
and FREE Associate Membership (no voting
rights, or under 18).
Please would you complete and return the pink
Membership Form enclosed in the New
Member Pack. Failure to do so could result in
our no longer being able to mail you
information. ◘
How I coped with ED, running a business and the
events along the way would make hilarious
reading. All I want now is to make sure no-one
suffers in the same way that I have done, and I
will do my best to help bring more awareness of
this condition to everyone. ◘
(Editor’s note: I hope you will write more
articles John, to include some of these funny
stories!).
☺☺☺☺☺☺☺
As ever, we are extremely grateful for
your donations which, since the last
newsletter, have amounted to £95. These
are particularly welcome as we move into
new areas, which incur additional costs.
Thanks too to those of you who continue to
send new stamps to cover postage.
Obviously as we grow, the information we
are able to share grows too, and it is
through your help that we can reach
others. Thank you, once again. ◘
Since the last Newsletter, the Executive
Committee has met once on 9 February
2002, and is due to meet again on 18 May.
Subjects discussed on 9 February were:
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Insurance – the Treasurer to obtain Public and Private Liability Insurance for EDS
Balance Sheet – to be created, updated and presented to each Executive Committee meeting
Publicity – New Member Pack to be created and sent out to all present and future members
Medical/Professional Press Release – to be sent out, promoting awareness of Society & ED
Press Pack – work continues on creating a press pack, and media guidelines for members
Update – Diana reported 10 new members, 2 with rarer syndromes, since last meeting
School Protocol – template being re-written to help/guide members when liaising with LEA
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Expenses – work continues in formulating guidelines and policy
Fundraising – Chairman to draw up framework, bearing in mind legal requirements, etc.
AGM – approval was given to defer this until 2003, to coincide with the members’ conference.
Parental Leave Update
Parental Leave gives parents of children the right to
take a period of time off work to look after a child, or
make arrangements for the child’s welfare.
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Parental leave rights were finally changed on 10
January 2002. The new rights are contained in the
Maternity and Parental Leave (Amendment)
Regulations 2002.
The changes will benefit
parents of children with disabilities and parents of
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children who were under five years old on 15
December 1999 (when the right was first
introduced).
The main changes are:
• Leave is increased to 18 weeks for parents of
children with disabilities (previously it was 13
weeks)
• Leave is extended to include parents of children
who were under the age of five on 15th
December 1999 (previously it was only for
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children born after 15 December 1999)
• Leave is extended to include parents of children
who were adopted between 15th December
1994 and 14th December 1999.
Who Can Take It?
Employees who have a baby or adopt a child on or
after 15th December 1999 and who have completed
one year’s qualifying service with their employer by
the time they want to take the leave. Employees
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who had a baby or adopted a child between 15
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December 1994 and 14 December 1999, and who
have completed one year’s continuous service
either with their current employer or a previous
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employer during 15 December 1998 and 9
January 2002.
Points to Remember:
• The leave is unpaid
• Both mothers and fathers can take parental
leave
• Employees get 13 weeks in total for each child;
parents of disabled children (for purposes of
Parental Leave, any child for whom the parent
receives Disabled Living Allowance) get 18
weeks in total for each child.
For further information, there is a Parental Leave
Helpline, run by the Department of Trade and
Industry (DTI) which operates Monday to Friday,
9.30 to 5.00 pm on (020) 7215 5986. The DTI also
includes a summary “Parental Leave – A short
guide for employers and employees” on their Web
Site: http://www.dti.gov.uk/er/parental.htm ◘
Thanks to Contact A Family for permission to
reproduce this article.
And finally …
what can I say after such a wonderful testimony from John. It breaks my heart as a mother to read
some of his stories, but gives me strength and encouragement to fight for ED to be a more recognised
rare disorder by all professional fields and to try and ensure that our children and our children’s
children do not have to go through the suffering that people like John have experienced. Thank you so
much for sharing with us, John.
The Conference is to be held 14th April 2003.
I must apologise as I think I confused many of you regarding the Conference dates next year by
sending all the information out prior to this Easter holiday. I should be most grateful if you could still
complete and return the form enclosed with my letter dated 4th February 2002 regarding the conference,
so that I may ensure I have provisionally booked enough bedrooms and rooms for children’s activities.
I hope you like the new look of our newsletter. The change in layout is because I am no longer putting
the newsletter together but have handed this over to Mary. I would like to take this opportunity to
thank Mary on behalf of all of us for the tremendous amount of work she does. What does she do?
Well, she is a personal assistant to me by
• reminding me of deadlines
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•
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providing me with an impartial listening ear from someone who doesn’t have ED in the family
doing the filing and updating all our records
completing updates for Health Authorities and other professional databases
taking minutes at both the Trustee meetings and Medical Advisory Board meetings
typing articles for the newsletter and, of course, putting the newsletter together
to name but a few of the many jobs. Without Mary I would not be able to cope with the amount of
work we now have. Thank you Mary from all of us, especially my husband and children as with your
help I am still able to cook their meals and run their home!
We are still desperately looking for a Graphics Art Designer to help with the change of our logo and the
publishing of a new leaflet. Please call me if you can help or have a friend/colleague who would be
willing to help.
We are also in great need of more articles for our newsletters. Please write an article, no matter how
small or large, funny or serious, it will be helpful, comforting and interesting to our readers. Many ED
individuals and families feel very lonely as nobody around them understands anything about ED let
alone what it is like living with all the problems ED brings. Please share.
From the enclosed you will see we have been busy implementing the decision at the last meeting of our
Trustees to send a formalised member’s pack to all new members. However, to ensure everyone has all
the same paperwork and we are not sending odd bits and pieces to existing members, we have decided
to send the pack to all members old and new. We are extremely grateful for the extra donation to cover
the costs incurred for this mailing.
You will notice that there is a pink Membership Application Form. As mentioned in the letter
accompanying the Member’s Pack (and this newsletter), and at the cost of repeating myself……it is
really important that you return the Membership Application Form……all members, old and new, who
return their forms will be added to our new list of members. However, if you do not return your form it
will be assumed that you no longer wish to be a member of the ED Society. Even if you have been a
member since the Group started back in the 1980s; we still need your form. So please, return the
completed pink form today.
Diana
Trustees (Executive
Medical Advisory Board Members
Committee Members)
Chairman
Treasurer
Secretary
Webmaster
Paul Collacott
Andrew Ponting
Mary Rawson
David Wyatt
Jean Miles
John Moss
Diana Perry
Ian Perry
Mandy White
and their fields
Drs.
Angus Clarke
David Atherton
Peter Crawford
John Hobkirk
Stephen Kaye
John McGrath
Richard Mills
Robert Mills
Celia Moss
June Nunn
Helen Stewart
Colin Willoughby
Clinical Genetics
Dermatology
Paediatric Dental Surgery
Prosthetic Dentistry (Implants)
Ophthalmology
Genetics, Molecular Dermatology
Ear, Nose & Throat
Otolaryngology
Paediatric Dermatology
Paediatric Dental Surgery
Clinical Genetics (Incontinentia Pigmenti)
Ophthalmology
Chairman
Disclaimer: The views expressed in this newsletter are taken in good faith and are not necessarily endorsed by the editor or the Ectodermal
Dysplasia Society. The use of a product name does not constitute a recommendation or endorsement by the Society.
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