November 2013 - Alopecia Victoria

Alopecia Areata
Support Association (Vic) Inc)
support services since 1980
November 2013
PO Box 89 Camberwell 3124
Melbourne Australia
Registration No. A 0017172Y
Helpline: (03) 9513 8580
[email protected]
www.vicnet.net.au/~aasa
Where do we come from? What are we? Where are we going? 1980
These questions are the title of a 19th century painting by the French artist Paul Gauguin* and seem
very relevent to AASA as an organisation today. AASA began as ARIFA in 1980 and in this newsletter we look at
some aspects of, “Where do we come from?”, in particular two examples of early efforts in Victoria to raise awareness, firstly
amongst the general public and secondly amongst health, education
and welfare professionals in 1982.
Has media coverage of AA changed
over the past 30 years?
Victorian AA media contact began in 1980 with an article in the
‘racey’ ‘Australasian Post’ issue of April 24th. (The cover image has been * More about this beautiful painting on the back page
cropped). Anyone who has the opportunity to tell their story to a media
outlet, whether a newspaper, magazine or another form of mass communication, probably thinks hard about the implications
for themselves and their message. However if the offer of coverage to get a message across is offered, it maybe worth the
risk to further ‘the cause’. However it pays to be mindful of your own ability to deal with the consequences. When the article
and images below were published in 1980, the tone was sensationalist and anything but sensitive. The subject of the article
(Pat Crotty) recounted the experience in the context of a discussion about revealing aspects of a private life and the challenges of ‘coming out’ as bald.
“One of my major experiences of ‘coming out’ was anonymous. It involved an interview as part of a magazine article about women with alopecia. The idea was to get some publicity for the formation of a self help group (which later became ARIFA) and in this sense the article was
very successful. It was also an interesting experience for me to read my comments on pages two and three of that archetype of sensational
journalism, the AUSTRALASIAN POST. The shock encounter with the first advertising headlines for that issue was quite memorable. “Trauma
of a bald lady” they yelled at the traffic passing innumerable milk bars and newsagents in letters that seemed ten feet high. It took me some
time to get up the courage to go and buy a copy, in case, by some unforeseen circumstance, people could identify me as the subject of the
story. Now I wish I had had the gumption to ask for the poster as well.”
(Extract from the SBRC Bulletin December 1982)
Editor’s Note: This was an early encounter with the media for me, and,
no, that wasn’t a photo of me on the cover! Pat
Persis Khambatta
(2 October 1948 – 18 August 1998;
was an Indian model and actress
best known for portraying Lieutenant Ilia in Star Trek: The Motion
Picture. Born in Mumbai, India, she
was of Parsi ethnicity
http://en.memory-alpha.org/wiki/Persis_Khambatta
© 2013 Alopecia Areata Support Association. Permissions [email protected]
1
Alopecia Areata
Support Association (Vic) Inc)
support services since 1980
November 2013
PO Box 89 Camberwell 3124
Melbourne Australia
Registration No. A 0017172Y
Helpline: (03) 9513 8580
[email protected]
www.vicnet.net.au/~aasa
Education on AA for Health, Education
and Welfare professionals
1982
Social Biology Resources Centre Bulletin
“Body Image - How prepared are we to look beneath the surface?”
About SBRC:
In the 1970s, Delys Sargeant AM was a founding director of the Social
Biology Resources Centre at the University of Melbourne. She developed ground-breaking courses in social biology and forged generational
change in the way doctors, teachers and health professionals understand, practice and educate about sexual and reproductive health, as
well as sexuality and relationships. Delys was inducted into the Victorian
Honour Roll of Women in 2012.
The Centre’s Bulletin of December 1982 was devoted to issues about
body image and ‘difference’. Alopecia Areata featured in 2 articles including the article reproduced here by Audrey Crocker, a pioneer of self
help and support for people with alopecia.
ARIFA: Alopecia Research and Information Foundation of
Australia
Audrey Crocker
Audrey Crocker is President of the Victorian Branch of the self-help
group, ARIFA.
December 1982
Try to imagine the traumas one experiences when
suddenly, one day, bald patches appear on the head and then,
within three weeks all hair, eyebrows and eyelashes have
gone. This happened to me at the age of twelve. Bewilderment
soon turned to distress when I was told by doctors that nothing
could be done for me and that there was no known cure. “I
must just learn to live with it”. All at once I was different and
people stared at me. I was suffering from a disease called alopecia which caused me to be bald. However the hair can grow
again if only a cure for the disease can be found. In some
ways, that “if only” made, and still makes, the condition harder
to live with, because it keeps hope alive in spite of other messages, which those of us with alopecia give ourselves.
Regardless of age, it takes time for people to adjust to
the knowledge that they have developed a disease for which
there is no known cure and that, for the rest of their lives they
are going to have to live with this disability. Desperation leads
the affected person, or parents of affected children, to follow
up all the odd and often painful, non-medical treatments which,
one hears, might help.
Eventually, people make a decision whether or not to
wear a wig. For a woman, societal messages about the importance of hair are such that she really does not have a choice,
2
© 2013 Alopecia Areata Support Association. Permissions [email protected]
Alopecia Areata
Support Association (Vic) Inc)
support services since 1980
but some men decide against a wig. However because the
scalp is very sensitive to sun, there is a real risk of developing
skin cancer. There is a choice between different types of wig.
For example, hand-made human hair wigs are very expensive,
so many people with alopecia cannot afford them. There is
continuing expense involved in caring for them and although
some can be washed, conditioning is required from time to
time. The alternative is a synthetic wigs, but compared with a
human-hair wig these only last a short time, although they are
easily cared for. Care must be taken when wearing these as
heat damages the fibre.
As with most disabilities, people learn to adjust to alopecia. They learn to camouflage the lack of facial hair with
make-up to care for the wigs and generally to hide the problem
from the rest of society. Thus, another difficulty is created, because people are living in silence with the disability, unable to
talk to anyone who understands what is involved in the day to
day living with alopecia.
For example, the difficulties of wearing a wig are numerous. Because they are very hot to wear, perspiration on
the head is a problem. Hot weather is something to be dreaded. Security must always be considered. Before leaving home
the weather must be checked - wind is a worry. Umbrellas
mean danger. In a theatre, a wearer must be aware of movement in the row of seats behind, remembering to lean forward
in case the head in knocked by someone entering or leaving.
Swimming is dependent on available private dressing facilities
and dancing is always a security risk. It is important to remain
aware of the proximity of other people, never relaxing guard
against the possibility of the wig being pulled or knocked off.
Double sided adhesive tape can be used to make a wig more
secure, but not all wearers can use it because of associated
skin irritations.
Eyebrows and eyelashes are meant to protect eyes
from dust and perspiration. Lack of these causes irritation and
discomfort and swollen eyelids are a common problem. Fine
hairs in the nostrils and ears filter dust and lack of these
causes irritation too, and infections in the nose and ears. The
constant necessity to be alert to all possibilities of danger
causes tension, adding to an already distressing situation.
Thus, it is not surprising that stress-related illnesses are common in alopecia sufferers.
November 2013
PO Box 89 Camberwell 3124
Melbourne Australia
Registration No. A 0017172Y
Helpline: (03) 9513 8580
[email protected]
www.vicnet.net.au/~aasa
cally a self-help, self-support group, made up of sufferers and
parents of affected children. They meet each two months to
talk out their common problems, to exchange information and
ideas on cosmetic aids, generally helping one another. Parents
discuss ways to help the children grow up understanding that
alopecia is a medical condition only - it does not diminish their
value as people
The aims of ARIFA are:
1. To encourage government recognition of the need for more
research into the causes of alopecia;
2. To obtain comparable health benefits to those which apply
to other physical disabilities, and
3. To obtain recognition by health funds that wigs are a necessary prosthesis.
The members would like to see much greater understanding and acceptance of this disease by people in general.
For so long this has been a hidden issue that ARIFA feels the
time has come when the public should be made aware of the
prevalence of this distressing disease. The pattern of our thinking is set in early childhood and that is the time when education about attitudes to all people with disabilities should begin,
at home and at school.
I lived in silence with alopecia for 43 years of my life,
never knowing anyone else in the same situation, speaking
about it only to a very few close family members and friends.
Almost two years ago I made contact with similarly affected
people through ARIFA. It was an experience I cannot describe.
Because of contact with others my attitude to life and to myself
has completely changed. I have gained much more confidence
in myself and my ability to do things. Certainly, the day to day
problems are still there, and I still have my “down” days, but I
no longer feel alone with my problem. I know that a telephone
call will allow me to speak with someone who really does understand how I am feeling. Helping each other is what ARIFA
is all about.
The article ended with information on telephone contact numbers for 3 ARIFA members, Audrey, Carole and Helen.
Government recognition of alopecia and the difficulties
faced by those who live with it has been minimal. Claims on
taxation returns for rebate on purchase of wigs have been refused, even when accompanied by a doctor’s letter stating that
it is a medical necessity to wear a wig. Health funds do not
recognise wigs for alopecia sufferers as being a necessary
prosthesis. For many, the financial burden adds to the stress
already existing.
Early in 1980, following media publicity given to a little
girl in Sydney, a group of alopecia sufferers held a meeting.
The result of this meeting was the formation of the Alopecia
Research and Information Foundation of Australia (NSW). The
establishment of the Victorian group followed. ARIFA is basi© 2013 Alopecia Areata Support Association. Permissions [email protected]
3
Alopecia Areata
Support Association (Vic) Inc)
support services since 1980
November 2013
PO Box 89 Camberwell 3124
Melbourne Australia
Registration No. A 0017172Y
Helpline: (03) 9513 8580
[email protected]
www.vicnet.net.au/~aasa
The late Audrey Crocker one of alopecia support’s earliest leaders
From the AASA newsletter of February 2009
Death of one of ARIFA/AASA’s founder
members
For those who do not know her. She was one of
the founder members of our group. Her
husband Pat set up the constitution and she of
course did her stint as President with both on
Committee for many years.
Audrey was one of our founder members of
what was formally ARIFA - Alopecia Research
and Information Foundation of Victoria. There
are not that many women over 'a certain age'
who attend AASA meetings. Audrey was the first
older woman brave enough to not only join the
Victorian Alopecia self-help group (ARIFA) but
to lead it. For women living with alopecia in the
1940s, 50s and 60s, life was not as free as it is
for us today. Wigs were not available and
certainly not of the quality and variety they are at
present. The level of medical knowledge about
Alopecia was not great and treatments were
sometimes weird and not so wonderful.
To have grown up as a bald woman perhaps
from childhood was much more of a burden
than it is today, and we know how burdensome
it can be. Audrey was therefore a pioneer in a
way in that she provided an example for older
women with Alopecia.
Audrey died after a short illness and will be
sadly missed by all that knew her.
4
© 2013 Alopecia Areata Support Association. Permissions [email protected]
Alopecia Areata
Support Association (Vic) Inc)
support services since 1980
November 2013
PO Box 89 Camberwell 3124
Melbourne Australia
Registration No. A 0017172Y
Helpline: (03) 9513 8580
[email protected]
www.vicnet.net.au/~aasa
So that's what eyebrows are for...
A self-improvement list
The British Psychological Society reports on a different aspect of eyebrows and suggests why they may be
important in communication.
Not everyone likes these type of lists, but here is one from
an extensive list of 30 by Marc Chernoff. Enough for everyone to choose one or two!! Marc also has a list of 30
things not to do
Why do we have a line of hair sitting caterpillar-like above
each of our eyes? Forget such mundanities as dust protection or ornamentation, a new study suggests our eyebrows serve to control how easily other people can tell
where we are looking.
Four participants looked at hundreds of photos of the eye
region of people who were facing forwards, gazing either
to the left or right of the camera. The photos varied in size
(a substitute for what, in real life, would be viewing distance), how long they were shown for and whether the
eyebrows were neutral, lowered or raised
Here it is a positive ‘to-do’ list for the upcoming year–(5 of
30) things to start doing for yourself:
Start spending time with the right people. These are
the people you enjoy, who love and appreciate you, and
who encourage you to improve in healthy and exciting
ways.
Start facing your problems head on. It isn’t your problems that define you, but how you react to them and recover from them.
The participants' accuracy in judging gaze direction from
the photos was unaffected by photograph size up to a critical point after which accuracy suddenly plummeted. Roger Wyatt and colleagues at Stirling University who
conducted the research said this pattern of results suggests we determine a person's gaze direction by comparing the amount of white eyeball visible on either side of
the dark iris.
Start being honest with yourself about everything. Be
honest about what’s right, as well as what needs to be
changed.
Crucially, the position of the eyebrows affected the size of
photo beyond which accuracy was affected. In other
words, if the eyebrows were raised, the participants were
able to judge gaze direction with smaller photos than if
the eyebrows were lowered. Viewing time affected accuracy regardless of photo size.
Start being yourself, genuinely and proudly. Trying to
be anyone else is a waste of the person you are. Be yourself. Embrace that individual inside you that has ideas,
strengths and beauty like no one else.
The researchers said the effect of eyebrow position was
suggestive of a social function for the hairy tufts, and
helped explain the 'eyebrow flash' – the convention for
people to raise their eyebrows at each other from a distance in a gesture of acknowledgement. “It may make the
eye gaze direction of the sender briefly visible to the receiver. Since that eye gaze direction is at the receiver, it
results in the receiver being given a brief 'I am looking at
you signal', which would communicate recognition,” they
said.
http://bps-research-digest.blogspot.com.au/2007/07/sothats-what-eyebrows-are-for.html
Start making your own happiness a priority. Your
needs matter. If you don’t value yourself, look out for
yourself, and stick up for yourself, you’re sabotaging yourself.
More on http://www.stumbleupon.com/su/2sjIFw#
Written by Marc Chernoff
The 3 important messages to teach in
schools to help students support their
peers with alopecia
1. Children with alopecia are healthy
2. Alopecia areata is not contagious
3. Alopecia areata is not life threatening
5
© 2013 Alopecia Areata Support Association. Permissions [email protected]
Alopecia Areata
Support Association (Vic) Inc)
support services since 1980
November 2013
PO Box 89 Camberwell 3124
Melbourne Australia
Registration No. A 0017172Y
Helpline: (03) 9513 8580
[email protected]
www.vicnet.net.au/~aasa
November AASA Meeting
NEWS
Saturday November 30th
2pm
Skin and Cancer Foundation (First Floor)
80 Drummond St in Carlton
(Cnr Queensberry and Drummond Streets)
This is an important meeting as we have before us a decision about how to approach 2014 as an organisation.
In August and again in September AASA was unable to
elect a Committee of Management for the 2013-14 year.
Currently, the 2012-2013 committee members are acting in
a ‘holding’ capacity as decided at the general meeting held
in September at the time of the unsuccessful AGM .
AASA currently conducts a number of services, the Alopecia Helpline
(formerly MessageBank) which involves 6 voluntary AASA members, a
social media presence (Facebook and webpage), peer support at the
Skin&Cancer Foundation hair clinics as well as a mail address and email
contacts which are listed on a number of community service registers.
If we are unable to put together a committee by the end of December this
year, it is proposed that the future of AASA will be discussed with members prior to and at the February 2014 meeting (22nd February), with a
view to ascertaining members wishes about the future of AASA services.
We would welcome your input to our discussion on November 30th. If you
are unable to come, please write to us with your views before the end of
this year. The Secretary, PO Box 89, Camberwell Vic 3124
Despite this rather gloomy news
we wish you a Very Happy Christmas and a safe and enjoyable holiday season!
News Local
and
International
In Melbourne
Our next general meeting,
Saturday 30th November, Skin
and Cancer Foundation, first
floor, 80 Drummond St,
Carlton at 2 pm.
“AASA in 2014”
In Canada
Dr. Jeff Donovan has provided
CANAAF with a research
report regarding: “What
educational messages do we
need to deliver in our
schools?” ..see more on this
page above
http://www.bluetoad.com/publ
ication/?i=157582
In the UK
Alopecia UK were at the
House of Commons in
London for the release of a
new report "The
Psychological and Social
impact of skin diseases on
people's lives". The report
said this impact is not
often considered in
treatment.
In the US
Dermcast TV has videos from
this year’s NAAF Annual
Conference including Mathew
Cogan an AA patient on how
dermatologists can be a
better resource for their
patients. ….by listening, says
Mathew.
6
© 2013 Alopecia Areata Support Association. Permissions [email protected]
More on Gauguin’s painting and our November cover
The original painting is in The Museum of Fine Arts in Boston.
“Gauguin had been a student just outside of Orléans, from the age of eleven to the age of sixteen. His subjects
there included a class in Catholic liturgy; the teacher had devised his own catechism to be lodged in the minds of
the young schoolboys, and to lead them towards proper spiritual reflections on the nature of life. The three fundamental questions in this catechism were: "Where does humanity come from?" "Where is it going to?", "How does humanity proceed?". Wikipedia
http://en.wikipedia.org/wiki/Where_Do_We_Come_From%3F_What_Are_We%3F_Where_Are_We_Going%3F
The community of Portarlington raises funds for the Cancer Council each year, partly through a beanie
exhibition and competition. The beanies are donated to raise further funds after the competition. These
are some of the 2013 entries.
Alopecia Areata
Support Association (Vic) Inc)
support services since 1980
November 2013
PO Box 89 Camberwell 3124
Melbourne Australia
Registration No. A 0017172Y
Helpline: (03) 9513 8580
[email protected]
www.vicnet.net.au/~aasa
7