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 is a 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:xxynetwork@iwon.comPost message: thexxynetwork@yahoogroups.com Group Email Addresses
XXYNOY-subscribe@yahoogroups.comUnsubscribe: 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, Group Info
medical, and psychological advisors.
Members: 136
Founded: Jul 10, 1999
Language: English
Subscribe: AAKSISsubscribe@yahoogroups.com Identifying common problems
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Members: 158
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Founded: Apr 5, 2000
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A "support/discussion List" for Moms and/or . Restricted membership
Dads whose son's genetic signature is XXY (or . Unmoderated
a variation thereof) and whose son's age is . All members may post
between onset of puberty and adulthood.
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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
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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 Pros:
Cons:
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 Pros:
Cons:
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 Pros:
Cons:
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 Pros:
Cons:
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 Pros:
Cons:
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 Subscribe: KSvariant4parents-subscribe@yahoogroups.com purchased at agricultural supply stores or for those in Unsubscribe: KSvariant4parents-unsubscribe@yahoogroups.comList owner: KSvariant4parents-owner@yahoogroups.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 Group Settings
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 XXY+PEDS
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
.

Source: http://www.47xxy.com/Sitedocs/KSSGV1.pdf