pip-uk | poland syndrome charity

Welcome,

We are PIP-UK, a UK based charity.

Raising awareness about Poland Syndrome. Sharing stories and providing support where needed

PIP-UK | Poland Syndrome Charity

Poland Syndrome or Poland's Syndrome is also known as Poland's anomaly or Poland's sequence is rare birth defect.

The actual number of babies born every day in the world with Poland Syndrome is unknown as it is frequently not diagnosed. Wikipedia states 1 in 70,000 to 1 in 100,000 are born with Poland Syndrome. That's about 3 – 5 new born babies world wide every day. So it's very rare.

Typically a new-born has webbed fingers or missing digits accompanied by missing chest muscles on the same side of the body. In later years this can give an asymmetric appearance as a child develops.

Sometimes the hand which has been uniquely formed is smaller than the other and the arm length may be shorter.

Thankfully Poland Syndrome is not usually life-threatening. However, childhood coughs and colds can be difficult to cope with as the missing muscles can mean it's harder to cough.

There are known complications and Poland Syndrome can occur in combination with other syndromes such as Moebius Syndrome

Why do we exist?A few years ago a little boy was born with Poland Syndrome.

At first his parents didn't know what was wrong with their brand new little boy. The doctors and nurses didn't even diagnose Poland Syndrome until was suggested by the parents. In fact they made the parents feel like they were fussing and told them many children are born with webbed fingers it wasn't a big deal.

After getting confirmation they went searching on Google for answers and struggled to find any information about Poland Syndrome apart from a few American websites with little information. The content was all very medical and factual. The parents wondered if he would crawl, would he be able to climb, should they put their little one through surgery... lots of questions but not many answers.

Months later they found a support group on Facebook and started to get answers to some of the questions even the doctors hadn't been able to give.

Shortly after they decided to help other families find those answers, to find the options available and to make sure the next person who typed “Poland Syndrome “ into Google, found some real help.

A year later PIP-UK was born!


Finding out later in life....On our journey we have discovered many people don't find out a diagnosis until later and have struggled to get an answer or a name for their uniqueness....


“I just found out I have Poland Syndrome”(Female, 25 years old)

“My 15 year old daughter has just been diagnosed

with Poland Syndrome”

“Doctor's told me my 5 year old son has Poland Syndrome”

“I was 48 years old before I found out I had Poland Syndrome”

“I discovered that I have Poland Syndrome, I am 19 years old”

What are we doing?

● We are steadily gathering stories from around the world and the UK about people who have lived with Poland Syndrome. Many people we meet believe they are the only ones out there.

● We want to educate, we have started with a relatively small circle of friends and family and expanded from there. We are starting this task by collating all the information and people we can find into one place; our website!

● We want to put people in touch with the right medical professionals who can give the best advice

● Primarily this will be about finding the right people in the UK. We are already aware of some medical professionals in the UK who are clued up on Poland Syndrome and we regularly put people in touch with them.

● Our long term goals are to get a list of medical professionals and everyday people together to share experiences and create a support network that anyone can use to have a group of professionals not just medical who are fully fledged members of PIP-UK.


Achievements ● We had a G.P. refer a patient to our website … this was a big win for us we knew we had finally

started to make an impression

● We attended the international Poland Syndrome conference in Italy in November 2013 and shared our story so far with a worldwide community of medical professionals, families and individuals all working together.

● 2-3 people come to our website every day from searching “Poland Syndrome” via Google and have a good look round the site.

● We are slowly gathering a following on Twitter and Facebook

● We regularly get emails and phone calls from families and individuals looking to find out more and we're only too glad to help …..

“Thank you for setting up this website, I thought I was the only one with Poland Syndrome in the whole world”

“I'm glad I found your website, thank you for your advice”

“I just wanted to let you know I read your website regularly as a father of a teenage boy with Poland Syndrome it can sometimes be difficult to know what to say” We


How can you help?● Spreading the world on Poland Syndrome is at the heart of PIP-UK the more people learn

about this syndrome the more likely we are to be able to help and support those in need. It’s easy just tell someone you know all about Poland Syndrome and you’ll be helping us on our way

● Poland Syndrome is a rare birth defect, affects around 3-5 babies born in the world every day. Visible signs in new born can be webbed fingers or missing digits on one hand. Less noticeable missing or absent chest muscles on the same side of the body

● You can donate money to us at http://www.pip-uk.org/donate Money raised goes to continuation of running our website and enables us to help others.

● Share our stories on Twitter, Facebook or from our website.

● Share this slide deck

● Share your experiences of living with Poland Syndrome with us and we'll share with everyone else. Learning to deal with life's ups and downs is easier when we share

● If your organisation believes you can help or has some information to share then please do get in touch


http://www.pip-uk.org/donate

THANK YOU FOR READING!


Follow us on Twitter @PIPManchester

Like us on Facebook https://www.facebook.com/pip.org.uk

Find out more at our websitehttp://www.pip-uk.org

Or you can email us [email protected]

pip-uk | poland syndrome charity

Health & Medicine