Newsletter: klinefelter's syndrome support group: victoria (kssg/v), winter 2001; 65k; eileen grichting
Newsletter: Klinefelter's Syndrome Support Group: Victoria (KSSG/V) WINTER, 2001
it appears that most people do not havethe time to attend meetings. Time will
KSSG/V Christmas Picnic and offered to do a trial run of a Newsletter. I am Inside this Issue Sharing information
For starters, I offered to pull information
are a few dollars in the KSSG/V 'kitty'
In this issue I have included- in the green
readers whether they want to 'subscribe'.
the addresses in & we'll print them.
the past few years… and that is why this
Why have a Newsletter
The KSSG/V is a loose grouping of
and what else to monitor in the health of
considerable distances from oneanother. A Newsletter can be a useful
information and bring it to our doctors.
trouble to gather information on KS.
waste! Share your 'finds' with the rest ofus through this Newsletter.
• taking unified action if needed.
Sharing experiences too can be helpful. Keeping up connections
KS have tried out the Androderm 'patch'.
ago. There were many group meetings.
injections. It would be good to hear from
. Winter, 2001 thexxynetwork.
Enclosed with this Newsletter isa
This list is for the 1:500 males worldwide that areeffected by the karyotype of 47xxy / Klinefelter
KS Email Discussion
Syndrome and or the variants. This list is run by
those affected and those that are directly connectedto those affected, be it a parent, spouse, friends and
or professionals. We communicate on this list forsupport and in an effort to educate each other.
This list is not moderated; it is patrolled to assurethat those with other than positive intentions are
This is a list for parents of xxy sons, or other
not able to hurt those on this list.
sex chromosome anomalies. Learning andsupporting each other is the goal. It is a
Group Email Addresses
restricted list and the moderator must approve
3.parents of children with KS.
mailto:firstname.lastname@example.orgPost message: email@example.com
Group Email Addresses
The AAKSIS email List has been
. formed to provide discussion, support, and
fellowship for the international community of those
medically diagnosed as being XXY (and variants),
their supporters, family members, spouses,
medical, and psychological advisors.
Founded: Jul 10, 1999
Identifying common problems Group Settings . Listed in directory . Restricted membership . Unmoderated . All members may post Group Info . Archives for members only
Members: 158 . Email attachments
Founded: Apr 5, 2000 Language: English Group Settings . Listed in directory
A "support/discussion List" for Moms and/or
. Restricted membership
Dads whose son's genetic signature is XXY (or
a variation thereof) and whose son's age is
. All members may post
between onset of puberty and adulthood. . Archives for members only . Email attachments are not permitted Klinefeltersyndrome
a new and gay friendly list for males who are
diagnosed with Klinefelter Syndrome, for postings,
discussions, and exchange of information and
Group Info Members: 74
Founded: Nov 9, 1999
Language: English Group Settings . Listed in directory . Restricted membership . Unmoderated Group Info Members: 18 . All members may post
Founded: May 6, 1999 . Archives for members only
Language: English . Email attachments are permitted Group Settings . Listed in directory . Open membership . Unmoderated . All members may post . Public archives . Email attachments are permitted
Care of the Patch site: the Gospelaccording to Faulding Pharmaceuticals
Faulding Pharmaceuticals released Androderm Patches in Australialast November. Here there is only one kind of patch - the Androderm
I wrote to Faulding with questions about using the
Patch. Elsewhere there are two types- Androderm and Testoderm.
How do the Patches compare with Injections? Below is an overview
"Skin irritation, topical corticosteroid creams
of the pros and cons for each method, which I compiled from postings
in response to your question, topical corticosteroids
can be used to treat skin irritation associated withAndroderm patches. You should ask your chemist
for an over-the -counter preparation of topical
corticosteroid cream. There a number of these
available, and your pharmacist will be able to
(Aristocort, manufactured by Lederle) is only
Generally, Androderm patches can remain in place
during showering, exercise etc. However, they may
become dislodged with heavy perspiration. Patches
should be applied late in the evening (at about10pm). If a patch dislodges before mid day, a new
patch should be applied to the same site. If a patch
- two types but little difference
falls off after mid day, wait until the usual evening
time and replace with a new patch in a different site.
I hope this information will be useful to you. Please
do not hesitate to contact us again if you require
Ron St Aubyn, from Louisiana, has been in nursingover twenty years- and himself has KS. He sends a
Comparison between types of patches:
more complete explanation for us on the use ofsteroid creams:
"The Triamcinilone acetonide cream has to be
applied in a very thin coat, before applying the
patch, and not to overlap where the adhesive of the
problems ranging from unpleasant itchingto painful skin ulcers
patch will be. The irritation is caused by the high
percentage of alcohol, used as a vehicle for thetestosterone to pass through the skin. It is the drying
(2 TESTODERM: two types: note: not available in Australia
out of the skin in those areas that causes the intenseitching. Udder cream, butt balm, and the like, are
Type 1: sticks only to scrotum
used to replace the moisture, to those areas after the
patch is removed. The cortisone creams are of no use
must shave scrotum weekly with razor blade
to the rash, after the patch is removed. It has to be
applied before. There is also a decrease in absorptionof testosterone, with the cortisone cream, since most
Type 2: sticks anywhere except scrotum
of that cream has petroleum jelly or some type of
wax derivative added as part of the emulsion.
Triamcinolone cream is usually prescribed with the
Androderm patch. Good luck, Ron St. Aubyn"
. Winter, 2001
More on creams and bandages whichmake the Patch work
There are two kinds of cream needed- a steroidcream just under the business part of the patch, and
KSvariant4parents . A Klinefelter Syndrome variant
another cream to sooth the skin irritated by the
Join this group if your child has any variation of Klinefelter Syndromeother than xxy. This group will provide parents with support and
The cream to sooth the skin irritated by the adhesive
understanding from other parents with similar need. If you are a xxyy
is a type developed for use on cows' udders! It
parent, please also join the xxyyparentnetwork list, also located at
seems to be very effective- when I finally found a
source for it in Melbourne, the sales person told me
Group Email Addresses
they sell more to people for their personal use than
Post message: KSvariant4parents@yahoogroups.com
dairy farmers purchase for their herds. It can be
purchased at agricultural supply stores or for those in
Unsubscribe: KSvariant4parentsfirstname.lastname@example.orgList owner: KSvariant4parentsemail@example.com
the Western suburbs, at the University of MelbourneVeterinary Clinic in Werribee. Group Info Members: 20
For vigorous boys and men, the patch often works
itself off. Where to find something that secures itwithout making you look like you have been through
the wars? Back to veterinary suppliers! The kinds
of bandage used on racehorses come in many
colours- and are often used by their riders as well.
Teen-agers are much less likely to object to a
coloured bandage- or so some parents report. XXY+ ADULTS
This list is designed especially for men with KS but family
"Rotate the sites of the patches" a local pharmacist
members may also subscribe. Each person wanting to
warned. Putting it on the same place every day
subscribe will be asked why they want to belong. There
are many active and well-informed subscribers to this list. When a subscriber posts a question, he can count on
And do talk to your GP or Endocrinologist about
receiving many replies and lots of good information and
ideas about or problems with patches and injections.
support. However, family members seeking support
This Newsletter does not have any intention of
should, in general, look to the email discussion lists
giving proper medical advice. The aim is to give
designed for parents or for partners.
sources of information. It is up to you to examinethe information and decide with your GP or Endo
Post message: XXY+ADULTS@HOME.EASE.LSOFT.COM
Subscribe: thebody of the message write SUBSCRIBE XXY+ADULTS
Unsubscribe: the body of the message write SIGNOFF XXY+ADULTS
To get one email a day (called a Digest) :In the body of themessage write SET XXY +ADULTS DIGEST
Finally we come to the end of the first Newsletter. Let me know what you think of it. My postal
address is on the first page. My email address is
Another email list is parents. Follow the instructions for
XXY+ADULTS- substituting XXY+PEDS wherever
Talk to me about ideas for the Spring Issue.
. Letter from Kli
. Winter, 2001
. Letter from Kli
Neuropathic bladder as a cause of chronic renalfailure in children in developing countriesReceived: 23 September 2005 / Revised: 5 November 2005 / Accepted: 6 November 2005 / Published online: 2 March 2006Abstract Neuropathic bladder is considered a threat to thekidneys if not managed appropriately. In this study, wereport our experience with neuropathic bladder at KingNeuropathic bladder is c
DIRECCIÓN DE FORTALECIMIENTO INSTITUCIONAL REPORTE FINAL: SEGUIMIENTO DE PROYECTOS PIFI 21MSU0014E Benemérita Universidad Autónoma de Puebla Ejercicio Fiscal 2008 Proyecto P/PIFI-2008-21MSU0014E-05 Aseguramiento de los indicadores de capacidad y competitividad académica para garantizar la pertinencia de los PE ofertados por la DES en Ciencias Valoración General