Poland Syndrome Support

The Voice of Poland Syndrome

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Here at PIP-UK we are currently undertaking some work on gathering information about Poland Syndrome, so that we can provide you with a one stop shop for the best information that is out there .

In doing this research, I just wanted to share with you some of the frustrations I am having as a mother of a child with Poland Syndrome, which I am sure most parents and people with Poland Syndrome have shared when they are searching for information.

I am continually coming across the phrases ‘under reported and under diagnosed’ and ‘exact incidence difficult to determine’.  These phrases are vexing me and it just makes me think ‘why’.  People with Poland Syndrome and their families deserve to have answers, we deserve to know why this happens, how many people this happens to and then potentially what can be done about it.

Thankfully at PIP-UK we are trying to do something about this, we would like you to join us in collectively aiming to bring about change,  so that we become the voice of Poland Syndrome.

There is a small step that we can all take to help make these changes, when you come into contact with a medical professional, tell them about Poland Syndrome, how you are effected and how rare it is.  The more interest that is generated in the medical world, the more likely new research into Poland Syndrome becomes.

We hope to publish in the coming months details of what PIP-UK is doing to lead these changes and become that voice.

If you have any information, thoughts, observations or questions, please get in touch by leaving a comment below.

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5 Responses to “The Voice of Poland Syndrome”

  1. Gwyneth Pocock says:

    Hi there, after many months, they say my grand-daughter has Poland syndrome, wish it were not so, but hey, as a SEN teacher I know there are worse things than physical difficulties. So let’s be thankful for small mercies. She has a dropped shoulder and a winging scapular, but uses both arms and hands, and her hands are not noticeably affected. I worry about the future though, regarding her breasts. Any information regarding treatment gratefully appreciated:) She is now only nineteen months and a fearless acrobat and climber!

    • Sam - Trustee says:

      Hi Gwyneth

      Thanks so much for getting in touch. I sent you an e-mail last week, i’m not sure if you received it? Might be worth checking your spam folder. I’ll copy and paste it below in a minute. There are a few options for treatments in regard to the chest. The most common ones that we know of are a musce transfer from the back to the chest (latissimus dorsi tranfer) and this is done at varying ages and the muscle grows with them. The second option is reconsructive surgery that can include an implant. Obviously to find out more it is best to speak to a surgeon, who will be able to discuss the each procedure in detail and help your family to decide what is best for them. There are some great surgeons out there that specialise in Poland’s Syndrome, if you let me know where you are in the UK I can send some details.

      My contact number is 07427380954, happy to talk any time.

      E-mail from me last week and e-mail from my mum too.

      “Hi Gwyneth

      Thanks for getting in touch with us.

      Your Granddaughter sounds like she is doing great in spite of all the challenges you’ve had in the first years.

      I know from when my son was born with Poland’s Syndrome, it takes a long time to be grateful for the small things, when you are so upset that this has happened to your grandchild. I was once told I should be grateful that he has a hand at all, that really did not help at the time. Its great that she is already athletic and I’m sure, just like my son, she will constantly surprise you with her strength and ability to adapt.

      People with Poland’s syndrome go on to live a fulfilled life, I know its hard to see that when they are so young if you are anything like me, all you can see are the challenges they will have to face. I truly believe we are only given the challenges in life that we can deal with.

      My son is 4 now and the children at school haven’t noticed his hand is smaller but he asks questions and we talk about it when he wants to. I have always told him that if anyone asks what is wrong with his hand, he should say, nothing this is how I was born, and its called Poland’s Syndrome, it doesn’t happen to many people so it makes me pretty unique.

      There are some good books that have helped me learn more about how people with Poland’s Syndrome have lived their lives and come to terms with things, that I think maybe really good for you to take a look at. There’s one called P.S you are loved by Cynthia Sharp, which is a collection of experiences from people who have Poland’s syndrome, young and old, its really inspirational.

      The second one is called Accidental Friends by Helen Pielichaty, its aimed at 13+ age group but charts a young girl living with Poland’s Syndrome and she is only effected in the chest.

      Also there is a support Group for Poland’s Syndrome, where you can connect with other parents and grandparents to share experiences, ask question and get support from others going through the same. The group can be found here http://www.facebook.com/groups/110595298970859/

      I hope all that helps, if there is anything else you want to ask or talk about, please get in touch. I know my mum would be happy to talk if you want to talk to another grandparent.

      Thanks again for your message.

      Sam
      Trustee – PIP-UK”

      “George is my grandson with Poland’s syndrome. Your granddaughter sounds like a lively bundle of fun. From what I’ve read about torticollis, the physio exercises are very successful but must be very tiring for you all. You should persevere and follow all the advice given by the physiotherapists. When George was born with Poland’s syndrome it took us all by surprise. Only with mum and dads perseverance did George receive the treatment he needed. Its very painful to watch a little one going through any surgery or treatment but you have to be strong and think positively, children are so resilient. Children with Poland’s Syndrome grow up to have a life as fulfilled and happy as the next child. I’m sure your grand daughter with fill your life with joy and happiness as George has with mine. The books Sam has recommended to you may help. Please keep in touch and let us know how your granddaughter gets on.” Liz PIP-UK

  2. maryanne downey says:

    hi I am a 47 year old woman who has Poland since a baby My mum never really said much about it as I was growing up,i always knew I was different from my sister, alli was ever told it was a birth defect and I was special I have never really felt special just different,i can not wear clothes I would like to wear and summer months are hard especially swimmim
    ng really hard to find something to cover up my defect,i have no pecs muscles I do have an nipple but no beast I was 30 before I found out it actually had a name as my mum and family just swept it under the carpet I do get sad I can not afford the operation and still cant understane why we have to pay we didn’t ask to be like this

    • Sam - Trustee says:

      Hi Maryanne

      Sorry for the delay in getting back to you. I’m sorry to hear of the tough experiences you have had living with Poland’s Syndrome. My son has Poland’s and I have given him as much information as I can, but I am lucky that I have that information. I know it has not always been around and there are many people that did not know what they have is called Poland’s Syndrome till late in life, it must be incredibly hard.

      I’m afraid I don’t know of any exercises that help, i’ve certainly never been recommended any.

      I’m not sure what country you are in but there are several support groups from USA, Italy and the UK and most people contact them through facebook, I will give you the links. I think it would be really beneficial for you to talk to someone else from the country you live in to see if they can help from their experience of getting an operation. We are based in the UK and are very fortunate to not have to pay for operations.

      USA https://www.facebook.com/groups/357138387683880/?fref=ts
      UK https://www.facebook.com/groups/110595298970859/

      If you don’t use facebook then please let me know and I can get in touch with them for you, just let me know which country you live in .

      Thanks so much for getting in touch and really hope we can help you find the advice and support you need.

  3. maryanne downey says:

    I would like to know if there is any form of exercises that may help

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