PIP-UK Poland Syndrome Support and Network (Scotland Branch)
By way of background on us, PIP-UK Poland Syndrome Support & Network started in 2011, initially as a community group, to raise awareness of Poland Syndrome (PS) and to improve the lives of those living with it. As we grew, we moved to charity status in 2020 in England and Wales and in Scotland in 2023, allowing us to formalise our support for others. Many of the families we connect with struggle to get the right diagnosis for their children or themselves. This left many with not just the physical difference and the marginalisation, but also mental health issues from a life lived without a diagnosis. Our Scotand Branch led by volunteer Jen Mellin is focused on finding and connecting more Poland Syndrome Families in Scotland and providing wellbeing session for children with Poland Syndrome.
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+ est. £205.00
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Poland Syndrome is rare limb difference you are born with, the body is affected on one side where muscles, bones or organs are absent or underdeveloped.d
There are no specialist doctors for PS, so for our community this means diagnosis & treatment is difficult. Parents are accused of mistreating a child when shoulders are hypermobile, teenagers go through years of torment, and adults live with debilitating mental health issues due to a lifetime of hiding their bodies. Our work is about supporting this marginalised community and for them to be treated equally against other disabilities.
Our activities include 121 engagements with individuals and families so we work directly with those affected. We also host community events that bring those affected together. We also run advocacy & wellbeing services and clinics with health care professionals to encourage their involvement. Our only UK clinic is for children at Birmingham Childrens hospital, we hope to open other clinics in Scotland and beyond for both children and adults so everyone with PS has access to care without the burden of explanation and worry of knowing more about the condition than the doctor. Finally, alongside social media campaigns, we run a Poland Syndrome Community Register to collect medical and wellbeing data on Poland Syndrome, the only data source on Poland Syndrome in the UK. We are doing all this and hoping to reach academics, researchers and healthcare professionals that will work alongside us to research and improve diagnosis and treatment for all with Poland Syndrome.
The Scotland Branch is planning children well-being sessions, a nature day and a Christmas party through 2024-2025.
