Kids, Mothers and Ehlers Danlos Awareness Month
It’s the last day of Ehlers Danlos Awareness Month and, of course, I’ve left it to the last day to write anything about it. It’s not that I haven’t done …
Search Results for: ehlers danlos
What schools need to know to support learners with hypermobility and Ehlers-Danlos syndrome
with Jane Green Ehlers Danlos syndrome comes in many guises and as such, it often takes a long time for people with this multi-symptomatic condition to be diagnosed. …
Unexpected association between joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type and obsessive–compulsive personality disorder
Rheumatology International The authors assessed 45 patients with Joint Hypermobility Syndrome/Ehlers-Danlos syndrome hypermobility type (JHS/EDS-HT) for a number of psychiatric disorders and compared the results to a control group. They …
Targeted next-generation sequencing makes new molecular diagnoses and expands genotype-phenotype relationship in Ehlers-Danlos syndrome
Genetics in Medicine This paper reports the use of next-generation sequencing to identify the different gene variants causing Ehlers-Danlos syndrome in a group of 177 patients. Next-generation sequencing (NGS) is …
Psychiatric disorders in Ehlers–Danlos syndrome are frequent, diverse and strongly associated with pain
Rheumatology International This study looked at the link between Ehlers-Danlos syndrome (EDS) and psychiatric disorders in a study involving 106 adult EDS patients in Canada. The authors found that EDS …
What’s in a name: Ehlers-Danlos Syndrome gets an important makeover
It’s rare for a medical condition to have its sub-types reclassified. It happened to autism a couple of years ago and there was uproar as people were worried they would …
Five years at Number One for SNJ
We don’t often brag about ourselves…but today is an exception so please forgive us… We are delighted to have been ranked the Number One UK Healthcare blog by influence- measuring …
We need more awareness that pandemic life is far from an equal experience
“It’s life, Jim, but not as we know it”… the Star Trek (mis)quote sums up 2020 for most people. Even if your family has escaped a serious coronavirus infection or, …
Does the government really want to support disabled young people to go to university?
** The rules referred to in this post have changed yet again. Read our new post here to find out how. However, the information below about our own battle to …
Autistic children unlawfully denied care assessments: Your parent carer group can help further research
with Professor Luke Clements and Dr Ana Laura Aiello Has your autistic child had a social care assessment of their needs? Either from the disabled children’s team or as part …
The curious decision to keep disabled children at school despite the Coronavirus crisis
As you will have heard, yesterday the Government finally announced it was closing all schools as the Coronavirus crisis spreads. However, schools will remain open for children of key workers …
Special needs parenting: Love, determination and fury
The first time I held my eldest as a newborn, it hit me that my needs would never come first again. It may sound strange, but it hadn’t quite occurred …
Racial discrimination and SEND: Why was I accused of harm?
Every child with SEND has a right to access the best provision to help them reach their potential. Their families must be treated with respect and dignity. Far too often, …
Review: Controlling pain with the PainPod
Some time ago, Renata and I were asked to review* a device called a PainPod that claims to control pain, a sort of Tens machine “plus”. A Tens machine is …
The SEND crib sheet: How you can help school help your disabled child
Back when my youngest was in mainstream, he didn’t yet have statutory support. Although the infant feeder school would have sent notes on to the junior school, as his parent, …
SEND inspections: what do Ofsted and CQC inspectors really think?
There have been a few happenings recently that I have intended to write about but meetings and other commitments, plus the good ol’ Ehlers Danlos, have meant it hasn’t been …
The power of pacing: Managing energy with a rare disease or chronic illness
It’s Rare Disease Day, something we traditionally mark, with both Renata’s and my own family being affected by rare conditions and all that it brings. This year I want to …
Parents’ top tips for summer serendipity with your disabled child
Ah, the school summer holidays, don’t you just love them? Six, long, glorious weeks of unstructured days stretching out before you… But just how glorious are those weeks when you …
While you’re reviewing “Children in Need”, can you fix SEND too please?
Recently, the government announced a multi-pronged review to, “transform education for children with additional needs and ambitious plans to improve the experiences of children in alternative provision”. I would have …
Abigail’s rare childhood disease that she won’t outgrow
It’s Rare Disease Day this week and evey year we like to highlight the day, on 28th February, by telling you some stories of children and their families who are …