PIP UK is a charity for Poland Syndrome founded in 2011 by mother and daughter Liz and Sam. They were inspired by the birth of Sam’s first child, who was born with Poland’s Syndrome in 2008.
Poland Syndrome is rare birth defect. The exact number of people this effects is unknown. Largely due to the fact that Poland Syndrome is often not known by the medical profession. PIP UK is here to change that. Poland Syndrome is visually seen by webbed fingers or a smaller hand on one side. This normally coincides with missing chest muscles.
PIP UK is run by a small group of willing volunteers who give their time freely in support of a great cause. They run the website to enable others to find the advice and information that they need. The site gets visitors and requests from all over the world. In recent times doctors in the UK have begun referring patients to the site which is a big leap forward.
Sam explains why PIP UK is so important:
Our family’s journey with Poland’s syndrome so far has been a rocky one, it took 18 months for the family to find a surgeon who showed an interested in the condition and was at the forefront of surgery for Poland’s Syndrome.
This 18 month journey involved many medical appointments with doctors/surgeon who didn’t know about Poland’s Syndrome and did not take the families concerns and worries seriously.
With the help of the Poland’s Syndrome Support Group, the family found the right surgeon for them who performed a less invasive surgery to release the webbing in their sons left hand.
Inspired by the difference this made in their lives, Sam and Liz established PIP UK to help others in similar circumstances. When PIP UK approached the web team they had one clear goal in mind. To be able to go to a search engine and type in Poland Syndrome and find support based in the UK. They had no idea how much help was needed around the world!
Information on Poland Syndrome:
Poland’s Syndrome, named after Sir Alfred Poland, Poland anomaly (PA) is described as an underdevelopment or absence of the chest muscle (pectoralis) on one side of the body and webbing of the fingers (cutaneous syndactyly) of the hand on the same side (ipsilateral hand).Sometimes referred to as “Poland syndrome,” it is an uncommon condition present at birth (congenital). For people born with PA, the breastbone portion (sternal) of the pectoralis is also missing.
The cause of Poland anomaly is unknown. Most evidence supports the idea that something happens during the sixth week of fetal development (gestation). This event most likely involves the vascular (blood and lymph) system.