One of the repeated comments and messages we get from people is the belief that they are alone with Poland Syndrome and we are asked for Poland Syndrome pictures. People think they are the only parent who has a child with this rare syndrome or the only person alive with it. We have learned through our journey at PIP-UK that some adults don’t find out they have Poland Syndrome until very late in life.
Social media is gradually changing all that. People are beginning to connect all over the world and find support from someone who really understands.
At PIP-UK we are on a mission to help, educate and inspire the world about poland syndrome. We will continue to bring you news on blogs, forums and support groups from across the globe. So today we share with you an instagram page which collects all the pictures loaded which have been tagged #polandsyndrome. If you find any useful sites or links or items you think we should share then get in touch and we will gladly do so.