Friday, 8 August 2014


Hi I'm Nicky and my eldest daughter Cora has IP. She is a spontaneous mutation and presented with the characteristic blisters at 3 days old we had no idea what it was and neither did midwives or Doctors. She was put on antibiotics because they thought it was a bacterial infection. My poor baby and very very stressful for us as new parents. I didn't feel able to hug or touch her properly not knowing what it was. She cried alot and was not a very content baby. At 9 wks after being in and out of paediatrics we were referred to a dermatologist who thought it could be IP but wasn't sure as he had never seen a case before. He didn't refer us to anyone else. We tried not to worry too much. A few months later she came out in the next skin stages with the warts and whorls all over her tummy. Back to Docs again and prescribed hydrocortisone cream. Still no proper diagnosis. Finally we had an appointment back with the dermatologist though and he referred us to a Professor at Birmingham Childrens Hospital in UK and to the geneticists at Gloucester Royal. The Professor confirmed IP at 18 months old. And a few weeks later genetics confirmed aswell. We were then in the system but far too late really however. We visit the Ophthalmology at Birmingham once a year at the moment. She is 7 next week. Up to now she just has tortuosity of the veins in the back of her eyes. Fortunately no signs of eyesight problems. She has all milk teeth but a few are peg shaped and they are noticeably smaller than her younger sister who does not have IP. So far the adult teeth are coming through ok thank goodness. She has compromised immune system and suffers quite badly when she is ill. Lots of stomach issues too. Her toe nails are very awkward to cut and are thicker than normal. She is affected by bites and stings with anything swelling up like a golf ball and taking ages to settle. In terms of development she has exceeded all my expectations and surprises me every day. My worry for her future is mainly her potentially passing it on to her own children and having that conversation about the realities of it all. I am sure she will be ok and take it in her stride and at least we ourselves can support her whatever happens. Thanks for reading.

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