The mental health of the Poland Syndrome community is of utmost importance to PIP-UK. The global pandemic has affected everyone’s mental health, add into the mix a rare condition and mental health can take a real blow. PIP-UK recently attended an event by Find a Cure which focused on supporting mental health in the rare disease community. We were saddened to learn of a recent survey which found 95% of people living with a rare condition were worried or anxious and 70% are at breaking point. We want to do all we can to support your families health and wellbeing and we hope these resources will be really useful in taking a step to get some extra support. Please reach out and get some support.
Mental Health Resources List.pdf by Sam.pipuk
Mental Health Resources by Sam.pipuk
Hi,
I have a daughter. She is 2 years old. She has Poland syndrome in her left breast. The doctor found this when she was 1 month old. Over time you can notice that the right breast is bigger than the left breast. My question is;
it would be better if we had an operation?
Do you know any doctors who can help me?
Best regards
Hi, its lovely to hear from you. I am sorry for the delay in getting back to you, this message got lost on our website. Surgery is a really personal decision for each family. The best medical information we have available to help you make your decision can be found here:
https://rarediseases.info.nih.gov/diseases/7412/poland-syndrome/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7405453/
We have some information on UK doctors that can help, I will send them over via e-mail along with some additional resources to help.
Meanwhile, We would love to be connected, we have a wonderful and active community.
Here are the best ways to connect:
1) Sign up to hear all the latest news and events from our community here: https://forms.gle/z6BqezxqqE3JWNGM8
2) Join our private facebook group, a safe space to share experiences and ask questions of other families here: https://www.facebook.com/groups/pipukpolandsyndromesupport
3) Sign up for our Poland Syndrome Community register, launched in 2022 we are working on improving the treatment and diagnosis of Poland Syndrome and collecting as much information as we can to help this goal. https://pip-uk.org/poland-syndrome-community-register