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
In my experience, many people – those with disabilities and those without – are uncomfortable talking about disability. The language people use can be a significant barrier to effective communication. The idea of embracing or even just acknowledging a disability tends to split people into one of two camps. You… Continue reading
Could your child benefit from equipment designed to help them live more independently? Has anyone talked you through the massive range of equipment available or how you can access it? Or do you feel like you’re completely in the dark? Perhaps you looked into independent living equipment a few years… Continue reading
Dr Dee Gaines, of the Dr Dee radio show, took part in a webinar hosted by RareConnect about aspects of Apert's syndrome with some affected patients and families. You can see the webinar recording below
If you received and read the first Elijah’s Hope newsletter back in May 2013, you’ll have seen that we’re keen to promote the importance of postural care and have launched the Positive Deviance (PD) Initiative to further this work. Why Postural Care Matters People with limited movement are most at risk of… Continue reading
