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Hi, my name is helena56!

helena56helena56 Member Posts: 1 Listener
Hi all hopefully I will get some useful info here.


  • Norton2018Norton2018 Member Posts: 21 Connected
    Hi.. Great stuff... Off to see my MP Monday... Re.. Pip decision... Anyone else in same position.. Apologies it's late but find it difficult to sleep which is natural with alot going on.. So pleased I found this site .. Folk same as me...
    Has anyone heard of Polands Syndrome .. It's a rare disease but I'd so appreciate any information as I was born with it.. Club hand... Lack of ribs.. Had lots of reconstruction surgery.. Still today.. Breast specialists and new gp.. Never heard of it... Not good.... 
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello Helena @helena56 and a warm welcome to the community. Glad you've found us :smile:
    Is there anything in particular you would like information or advice on? We're here, and listening.
    Very warmest best wishes,
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    And hi, @Norton2018, and it is good to hear from you again. We must all have signed off for the night by the time your post came in - sorry if you've been kept waiting.
    I Googled Poland's Syndrome and found a number of resources. One which looks interesting is this https://rarediseases.org/rare-diseases/poland-syndrome/, although it appears to be an American site. There is also https://contact.org.uk/medical-information/conditions/p/poland-syndrome/. This claims to be for parents of disabled children, but the information is still there and they also have an online community. There are a number of others.
    You might like to have a look in and perhaps post to our forum 'Undiagnosed and rare conditions'.
    Hope something in there helps - and don't hesitate to say if it doesn't or to tell us about anything else you might want help with.
    Warmest best wishes,
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @helena56, and welcome to the community! How can we help?
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