The early signs to us discovering Vascular EDS: We noticed as a baby AJ would bruise very easily. This could just be from tickling her on her chest to having finger marks and bruises on her legs when holding them whilst changing her nappy and we knew this was not normal and kept pushing the GP to have us referred. More blood tests were carried out all of which came back clear, however the Doctors agreed it wasn’t normal to bruise so easily and referred us to the haematology team at Royal Manchester Children’s Hospital for more tests. It was at this stage that AJ was diagnosed with the bleeding disorder, von Willebrand. The haematologist decided it was a good idea to refer her to a dermatologist because of previous injuries and the fact her skin was so thin. We were then referred to the EDS Diagnostic Centre based at Sheffield Childrens Hospital in the UK. For any family it would be very difficult trying to keep yourself together knowing your baby has a medical condition especially an unknown condition yet to be diagnosed. The bruising on Annabelle is a daily occurrence and quite often unexplained and it can be upsetting to witness people pre-judging in the streets or even within A&E, we knew we had to keep fighting for answers and unfortunately for some families the sight of these bruises would trigger the intervention of social services and possible removal of a child due to suspected child abuse. When AJ was only 12 months old she had an unexplained bleed from her right eye, no trauma impact that we were aware of so could only suggest it came from her knocking her head on the side of her cot? The blood seeps from her eye, covers her cheek and cot, so you can imagine how frightening it was for Sarah when she went into her bedroom to do the normal checks to witness our little girl experiencing these issues, something we expected and assumed she would grow out of. We are fortunate to have a great medic team based at Royal Manchester Children’s Hospital (RMCH) and the support of three very special consultants; Dr Will, Consultant Haematologist, who looks after AJ for her Von Willebrand, Dr Clayton, Consultant Dermatologist and Prof David, Consultant Paediatrician who oversees AJ’s care for the vascular EDS. Know the signs - It could help save a life. #VascularEDS annabelleschallenge.org
Posted on: Thu, 03 Jul 2014 13:00:01 +0000