Poland Syndrome Support

Why is there a need for PIP-UK?

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Imagine your new-born child was born today. Your world is lit up in an instant. A part of you has been created.

Imagine finding your child has a uniquely formed limb.

Imagine being told “It’s not life-threatening, your child can still walk and talk. He’ll have to make some adjustments but he’ll be fine.”

Imagine not knowing what is wrong with your child.

Imagine coming home from the hospital and trawling through pages of Google searches and discovering your child has a rare syndrome.

Imagine taking your child to a doctor and having them stare blankly at you when you explain that you suspect your child has a rare syndrome because the doctor has never heard of the syndrome.

Imagine having to fight for surgery or medical tests because the doctors don’t know about the rare syndrome.

Imagine being told your child will have to have surgery which includes a skin graft for which the skin will be removed from the groin area. Then imagine finding out there was a less harmful but successful procedure.

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Imagine having to go backwards and forwards to a G.P. to get a referral to a specialist who can help your child as soon as the referral comes through. Imagine months and months of waiting.

Imagine rushing your child to the emergency room as you suspect the on-set of one of the symptoms of a rare syndrome and having to explain to the doctors what your child has, what it means and why it’s important certain tests are carried out.

These events transpire every day, imagine that!

This is why we are here, running this charity and raising money to raise awareness to the medical professionals and to support families.

Stay tuned to find out more about what we’re doing!

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5 Responses to “Why is there a need for PIP-UK?”

  1. Sheenalpratt@hotmail.co.uk says:

    This is so near what happened to my daughter no doctor new what it was, they had to do research. As a grandmother with a grandson who was a year old yesterday, is surgery always the best way. He has no thumb and only one little finger. Surgeons are wanting to make him a thumb from one of his toes are there any people who have had this done. How do they feel now

    • PIP Admin says:

      Hi thanks for getting in touch. We are reaching out to our network to get some responses for you from parents and individuals who have actually been through this surgery. In the meantime Great Ormond street has a really good
      fact sheet: http://www.gosh.nhs.uk/medical-information/procedures-and-treatments/toe-hand-transfer
      Some parents we know have chosen to wait until their child is older so they can engage them in the decision, we also know some adults who went through this when they were young and are happy with the outcome. It is a really difficult to decision to make. You also might find this useful to read a blog post by a family who chose to do a toe to finger transfer : http://ourmixedblessings.blogspot.co.uk/2014/03/decisions-decisionshow-we-decided-to-do.html
      Any questions you might have do please ask, there is a larger community out there who have been through this who are only too willing to share their experience.

    • Charlotte says:

      Hi sheenal I have cleft hand and feet so I was born with only only one digit on each hand and two toes on each foot when I was one years old I had the digit on my right hand split in to two I was under great ormond street from 5 months old to 16 years old I have had many operation I have had a toe to thumb transplant and I am so pleased my mum n dad decided to do it because it helped me so much with grip and carrying thing n so much more my thumb is fused in place so it cannot move but this is very rare and it is only like that because I have a rare form of my disability where all my veins n tendens are not in the right place but I have only seen one person with my disability with a working thumb and they also said it was the best decision because it helped so much I understand how hard theses choices are to make so if you would like any more information or anything you can email me or write back on here my email is charlottecross68@icloud.com xx

  2. jeff says:

    is there a online community for this type of thing?

    artjwca@yahoo.ca

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