Childhood Dystonia Awareness UK

[Childhood Dystonia Awareness UK @CDAUK2024]

Our incredible admin has a published book out. We may be biased but we think this is a must have for any health proffessional working with children and parent carers. It really delves into the language used.
https://t.co/xPfgCXm9CH

[Childhood Dystonia Awareness UK @CDAUK2024]

one of our admins Adrian shared his sons story with Dystonia Europe for there #morethandystonia campaign as part of Dystonia awareness month.

https://t.co/cEboQP2gGe

[Childhood Dystonia Awareness UK @CDAUK2024]

To all the parents, siblings, grandparents, Carers and PAs and others throughout the profession thank you 💙

#childhooddystonia #complexcare #CarersWeek #carersupport

[Childhood Dystonia Awareness UK @CDAUK2024]

Status Dystonicus (Dystonic Storm) is a medical emergency. It causes a severe escalation in dystonia, leading to pain, exhaustion and potentially life-threatening complications. CK levels may rise from muscle stress, but doctors assess the whole child, not just blood results. 💙

[Childhood Dystonia Awareness UK @CDAUK2024]

Our volunteers running our group each and every one of our admins is a volunteer. We receive no funding and do everything because we want to make a difference to parents lives using our lived experiences to help guide others.

[Childhood Dystonia Awareness UK @CDAUK2024]

@drcolindunkley Hope you enjoy as much as we have. We know you you like to be philosophical from your posts so believe this book is totally you ♥️. Let us know how you get on with it 😀

[Childhood Dystonia Awareness UK @CDAUK2024]

Our incredible admin has a published book out. We may be biased but we think this is a must have for any health proffessional working with children and parent carers. It really delves into the language used.
https://t.co/xPfgCXm9CH

[Childhood Dystonia Awareness UK @CDAUK2024]

world digestive health day

[Childhood Dystonia Awareness UK @CDAUK2024]

For all our children that suffer with both Dystonia and Epilepsy 💙💜

[Childhood Dystonia Awareness UK @CDAUK2024]

Recgonising GI dystonia and gut issues in childhood Dystonia can often lead to better outcomes and better quality of life for children.

#Dystonia #GiDystonia #complexcare #childhooddystonia

[Childhood Dystonia Awareness UK @CDAUK2024]

Stop mimimising Childhood Dystonia by saying things like.

"Children dont suffer as much as adults"

"Children can cope better with it"

"Children learn to live with it"

[Childhood Dystonia Awareness UK @CDAUK2024]

Holistic approach to treating a child with Dystonia/Epilepsy

Holistic care is absolutely essential in children with complex dystonia—but it’s often misunderstood. It does not mean “stop medical treatment.” It means treat the whole child, not just the diagnosis.

[Childhood Dystonia Awareness UK @CDAUK2024]

We got requested by a lot of parents for a simple guide for schools that a parent can take to school and the school can use to help them understand Dystonia.

#Dystonia #childhooddystonia

[Childhood Dystonia Awareness UK @CDAUK2024]

So much more needs to be done to combat gut issues in Dystonia. 95% of parents in our support group believe gut issues are there childrens biggest cause of dystonic flare ups. Surely more research can be done around this.

[Childhood Dystonia Awareness UK @CDAUK2024]

A child with both Epilepsy and Dystonia can be challenging. Parents often have to differentiate the differences between what is a seizure and what is Dystonia this can often take years and over time our children like to throw a curve ball.

[Childhood Dystonia Awareness UK @CDAUK2024]

Dystinia awareness month and mirgraine and headache awareness week.

Is there a connection between Dystonia and headaches and migraines.

#dystonia #dystoniaawareness #childhooddystoniaawareness

[Childhood Dystonia Awareness UK @CDAUK2024]

Did you know ?? 💙 lets share this post best way to educate others about Dystonia is teaching them about something they already know.

#FocalDystonia #writerscramp #dystonia #dystoniaawareness

[Childhood Dystonia Awareness UK @CDAUK2024]

Dystonia Awareness month 💙

👉 What is Generalised Dystonia 💙

#Dystonia #Dystoniaawareness #Dystoniawarrior

[Childhood Dystonia Awareness UK @CDAUK2024]

Join our Childhood Dystonia Support Group – open to children with dystonia, parents & close family across the UK & Europe. 💙
A safe space to share, connect & support each others.
please share!

👉 Join here:https://t.co/4808rxrlG6

#Dystonia #Dystoniaawareness #Dystoniasupport

[Childhood Dystonia Awareness UK @CDAUK2024]

Dystonia Awareness month post 💙

Highlighting Respiratory Dystonia 💙💙

#Dystonia #Dystoniaawareness #dystoniawarrior #dam2025