In April I had a call from the head of my children’s primary school to ask if my two youngest children (who attend the school) would like to present a whole school assembly about the medical conditions that are in our family. It would be completely up to us what we said, how we said it and the individual topics that we chose to cover. The head thought that it would be a lovely idea to share their experiences, if they felt happy with that. I said I would ask them both and get back to them. I think being an advocate for invisible illness must run in the blood because they could have bitten my hand off when I asked them and they immediately got to work making a power point presentation. We had a chat and decided to just cover EDS. Talking about EDS and CMT in one go…

The Reality of Fatigue

Fatigue. Chronic debilitating fatigue. Now I don’t mean being tired, tiredness and fatigue are very different things. We all get tired, our lives are busy, we put far too much pressure on ourselves to perform at school or at work.  To be the best mum, dad, wife, boss,…

#ZebraDay 2017

Today all around the world members of the Ehlers-Danlos community and their friends and family will be wearing their stripes to raise awareness of the Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders. For EDS awareness month my two youngest children were invited by their headteachers to present an assembly to…

Brunel University – Common (or not so common) Paediatric Conditions Last May I had the great opportunity of being welcomed to Brunel university to co-present a lecture on common paediatric conditions with the head of our local child development centre.  The lecture, to second year physiotherapy students, formed part of their paediatric module.  I covered the nitty gritty of the conditions that my children live with before moving onto what I think their role should be. The important knowledge that they will not learn from text books. This year I have been invited back to do the same again and to work with them during a practical session along with one of my children. This posts looks carefully at the knowledge that I want physiotherapists to know before heading off into the real world to work with our children including some of the slides from the lecture.  Everyone is…

My Love, Hate Relationship With Tea

he great British cup of tea… I have to admit as I sit here cup in hand, I am slightly addicted.  Meeting up with my with my girl friends at the local coffee shop on a Friday morning wouldn’t be right for me without my nice cup of tea.…

EDS Kids Handbook – The Memes

The Memes from the upcoming ebook by Kendra Neilsen Myles and Sarah Wells, with a special section on Vascular EDS written by Deborah Roach.  A sneak peak into the Top Tips section of the book.  Share far and wide, we are #Stronger2Gether.      SaveSave SaveSave

Over the Iast couple of weeks I have had different conversations with people about their child’s school.Two families, at totally different schools, (and different schools to all my children), with very different situations.  What they had is common was the feelings that their encounters with school had stirred in them.  Both had children with needs over and above those of the other children in the class and the unknown scared these two mums, they were emotional and fearful of what the future held. I think they both spoke to me because they knew I would ‘get it’.  Over the last three years ‘school’ and my children’s education has caused me more stress, upset and sleepless nights than managing all of their health conditions.  This got me thinking, what is it about dealing with school when your child is not the norm that makes it so stressful for parents? So why…

Dear Younger Self

Thirteen years ago I gave birth to my first child, as he enters adolescence (and I wonder how that could be possible) I realise a lot has changed and there is much that I have had to work out for myself.  So I decided to write my 2004…