Poland Syndrome Support

Introducing PSSG – Poland Syndrome Support Group

PSSG – Poland Syndrome Support Group

Say hello to our little gnome. Being nosy by nature he goes off and investigates charities and support groups our readers might be interested in. Today he’s telling us about PSSG – Poland Syndrome Support Group. You can find out more from their Facebook Group or contact them through Twitter. The group on Facebook  is open and our experience is they are very willing to help you out any way they can.

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9 Responses to “Introducing PSSG – Poland Syndrome Support Group”

  1. Robyn Knibbs says:

    Hi there, I am just wondering if you know of any Poland Syndrome Support Groups in Australia? My 11 month old son has Poland Syndrome. He has no right pectoralis major, He has half muscle mas in both sections of his right arm and his right hand is smaller and syndactyly. He has only 4 metacarples in his right hand and his hand bones are in a muddle. He has had his first syndactyly release (between 2nd and 3rd finger) but we are awaiting an angiogram then the final release and removal of his ring finger. The Royal Children Hospital in Melbourne has been wonderful, but I have no idea where to turn for support, or contact with other families with children with Poland Syndrome.
    Any help would be appreciated.
    Thank you
    Robyn

  2. Sam - Trustee says:

    Hi Robyn,

    Thanks for getting in touch. Sounds like you’ve had a really rough first year with Poland’s Syndrome, the first year was one of the hardest for us, our son had his webbing released at 18 months old, he is 4 years old now and thankfully discharged from the surgeon.

    I’ve had a really good search and there is not an actual support group for Poland’s in Australia that I can find unfortunately. But I did manage to find some individual links and the details of a lady who arranged a Poland’s Syndrome meet up in 2010 Bargara Beach, Bundaberg. I think that phone number would be a really good starting point, even if they are not meeting up anymore; hopefully they can connect you with other mums nearby.

    I am happy to talk anytime, I know it’s not the same as being in the same country, but it’s good to know that others have been through the same emotions and difficult decisions that you have. I spoke to another mum in Ireland when I had some tough days when he was baby and it really helped. I’ll add you on facebook so we can have a chat on there sometime if you like.

    Also, have a look at the Poland’s Syndrome Support Group UK page, there are lots of nationalities in the group, so you may find someone from Australia there too.

    1) http://forums.bettermedicine.com/showthread.php/5690-mobius-and-poland-syndrome

    2) http://health.groups.yahoo.com/group/PolandSyndrome/message/382?var=1

    3) 25 Sep 2010 – 2:00pm
    Event Type:
    Workshops/Conferences
    The 1st Annual Poland Syndrome Meet Up Australia will be held on the 25th of September 2.00pm at Bargara Beach. Anyone with Poland Syndrome and their families are welcome.
    There will be a sausage sizzle and light refreshments provided on the day.
    For more information you can call the team leader Christie Wishart on 0417042182.

    https://bundaberg.qld.gov.au/event/10/09/25/1st-annual-poland-syndrome-meet

    (Boring disclaimer, sorry. Please note I have briefly checked the content of these websites, but they are external to PIP-UK and PIP-UK is not responsible for the contents of these websites)

    I hope to speak to you soon and that these links are of use to you. Anything else we can help with let me know.

    Thanks

    Sam

  3. Cameron says:

    I am from Australia and i have PS and Moebius Syndrome. I would like to know if anyone has problems with fluid in the ears and also congestion in the throat which you cant cough up. Is this because of Poland’s or Moebius or both. I am pretty sure my problems with my ears and throat are related to my condition.

  4. Sam - Trustee says:

    Hi Cameron

    Thanks for getting in touch. I have heard of people with Poland’s syndrome having difficulty with congestion at times, due to the lack of chest muscle. I’m sorry but I can’t hep with Moebius syndrome, but I do know of some people who have both Poland’s Syndrome and Moebius and I have listed some links below to help you get in touch with them. The following groups I have used myself when I have questions only people with the same condition can answer. I really hope they help. I also found a Moebius support group in Australia that may be of use. I really hope they help, please keep in touch and let us know how you get on.

    Poland Syndrome http://www.facebook.com/groups/128264097252708/
    http://www.facebook.com/groups/110595298970859/
    Moebius Syndrome Support Australia
    http://www.facebook.com/groups/275725426338/?fref=ts
    http://kidswithfacialparalysis-moebiussyndrome.webs.com/

  5. michael rogan says:

    Are there any PS comferences or meetings in Australoa in 2014?
    Thank you

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