Words by Abi Scaife
PIP-UK is a charity, created by one determined mum, to help those suffering from a rare illness - Poland Syndrome.
“The charity started really out of the seed of inspiration and passion to make sure that no one was ever alone with the condition again because it's rare, it's very isolating,” explains Sam Fillingham.
Poland Syndrome is an incredibly uncommon syndrome - with the main symptom being an absent chest muscle on one side.
“For women, that experience means that they only develop one breast. So for women, it's quite a difficult journey,” says Sam. “One of PIP-UK’s goals is to help support women who struggle with Poland Syndrome, and the mental toll and body dysmorphia that can come with it.”
Other than a missing pectoral muscle, those who have the illness may have an underdeveloped rib cage on one side, or webbed fingers.
Because of how rare the syndrome is, it is so difficult to get a diagnosis - and it can be incredibly isolating. That’s what PIP-UK are fighting to change.
Sam’s son, George, was born in 2008 and when he was diagnosed with Poland Syndrome she was left confused, alone, and with little to no resources to turn to. She soon realised that there were other parents who were in the dark in the same way as her, and decided she had to help them.
“The NHS doesn't even recognise it as a condition. It's not in their data set, so everyone's treatment path and path to diagnosis is really different - and pretty awful, for the most part.”
In 2011, Sam set up PIP-UK. Initially, it was just a website and a phone number - somewhere people could turn to for comfort and support. Today, it is so much more than that - not only do they support people and families that have been affected by Poland Syndrome, they have the only database on Poland Syndrome, and are able to connect people in need with surgeons in the know.
“No one else has much information about Poland Syndrome, because it's so rare - we have the only global database on Poland Syndrome, really, to start tracking the symptoms,” says Sam. “Then, from starting that database, we grew relationships with surgeons. We have the first clinic in the UK dedicated to Poland Syndrome at Birmingham Children's Hospital, basically born out of the spark of talking to surgeons.”
Thanks to Sam’s tireless efforts, Poland Syndrome has grown into an incredible community that supports each other through thick and thin.
“[Our] mission is to increase awareness, connect people and support people, and to one day be the centre of expertise for all of those things,” explains Sam. “Currently, we offer one-to-one support, wellbeing programmes and connection events.”
Poland Syndrome Awareness Day is on April 30th and is exactly what it says on the tin - a day all about PIP-UK’s mission to raise awareness of Poland Syndrome. They are recruiting for funds and volunteers, to help keep people informed, and give support and advice to people who are struggling.
“It has a massive effect on people. I think it's just not been recognised and given that voice,” says Sam. “And I think the lack of research … is because there's not going to be any drug that could fix this. So it's never been an attractive proposition for anyone to research into.”
For Poland Syndrome, there is no defined treatment path - whether you are eager to look into surgery, or you are happy without. The most important thing, something that Sam and her volunteers at PIP-UK are aware of, is to find your community, find your support system, and make the best choices for yourself.
If you’re interested in helping to raise awareness of Poland Syndrome, or in volunteering with PIP-UK, you can find plenty of information and resources on their website.
Charity check-in
At Smiley Movement, we like to elevate the work of charities across the world. Here are three charities whose causes align with the themes in this article.
PIP-UK. This is the only charity in the UK that supports people with Poland Syndrome and helps to put them in touch with healthcare professionals. Find out more and support them here.
Rare Disease UK. This is the national campaign for people with rare diseases and all who support them. Find out more here.
Beacon. Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. Support them here.
This article aligns with the UN SDG Good Health and Wellbeing.
