“People with complex needs don’t feel pain?” A guest blog from former physiotherapist, Liz Goldsmith, of Postural Care Skills on why gentle postural care should take into account pain prevention for every patient, whatever their disability. NICE Guideline on spasticity: evidence update 70 endorses the deliberate infliction of pain on… Continue reading
Our online Apert community at RareConnect is hosting another Apert-focused webinar this weekend. It’s looking specifically at the issues of Grief Vs Depression and the perceived taboos and forbidden feelings felt in these situations. For all details of how to access, visit our RareConnect Apert Community Continue reading
FREE Seminar – Funded by CANparent How Parenting affects Children’s Brain Development Two events – a morning workshop for parents and an afternoon seminar for professionals, Bristol. Date: 5th February 2015 1. Workshop for Parents: 0900 registration-11-30am 2. Seminar for Practitioners/Professionals: Time: 12.30 am (registration opens at 12.00) to 4.30 pm Location:… Continue reading
Elijah’s Hope is proud to announce the release of the official conference brochure for the Postural Care conference taking place this April. Places are being booked already so download the brochure and reserve your delegate space. Postural Care CIC and Elijah’s Hope are working in partnership to deliver this innovative, exciting… Continue reading
The Postural Care site has interesting posts and perspectives on the subject of postural care. Here is a recent example: Thoughts on Postural Care Leadership by Ross Golightly BCU student nurse In tweeting with Sarah Clayton from Postural Care after this year’s positive choices conference I was delighted to get the… Continue reading
Here are a few tips that may help when your have a child with Apert from Tania Weissman. Make sure your child has been properly diagnosed, not only with Apert Syndrome but also with the variety of congenital malformations that can occur during gestation. Your baby will require follow up… Continue reading
Dr. Dee discusses Apert syndrome and neuropsychology with parent advocate Tania Weissberg. Originally published online here. Continue reading
Tania Weissman writes about the use of orthotics with a child who has Apert syndrome. Children who have Apert Syndrome experience a variety of boney idiosyncrasies and their feet are a perfect example of that. In some children, the big toe may or may not be fused to the rest… Continue reading
Since surgery is the only option to address the fusions caused by the mutation and that my son was severely affected by the syndrome, I always followed the Doctor’s recommendations. 18 plus surgeries later, I don’t regret having used the best of what modern medicine had to offer. However, there… Continue reading
UK-wide charity, Carers Trust, defines a carer as “anyone who cares, unpaid, for a friend or family member who, due to illness, disability, a mental health problem or an addiction, cannot cope without their support”. It’s fair to say that the role and experience of each carer is unique but… Continue reading
