DMD Care UK Webinar - Steroid Stress Dosing Workshop
30th November 2020
Duchenne UK's cofounders Alex and Emily were joined by DMD Care UK project manager, Cathy Turner, Dr. Jarod Wong, Clinical Senior Lecturer/Honorary Consultant from the University of Glasgow and Mr. Dan Purton, Paediatric Endocrine nurse specialist from the Royal Hospital for Children Glasgow.
Watch the recording here:
Further resources from the webinar:
- View the patient leaflets: dmdcareuk.org/information-leaflets
- Order your steroid dependent wristband
Please help us by completing our Steroid Stress Dosing survey:
These are two different surveys to fill in, depending on if you are an adult living with DMD or the parent/caregiver of a child with DMD:
Adults living with DMD - https://www.surveymonkey.co.uk/r/emergencysteriodplanadults
Parent/caregiver of children with DMD - https://www.surveymonkey.co.uk/r/emergencysteroidplan
DMD Care UK is our new nationwide initiative to make sure everyone living with Duchenne has access to the best care.
For more information, please visit dmdcareuk.org
NOTES FOR EDITORS
What is Duchenne Muscular Dystrophy?
Duchenne muscular dystrophy (DMD) is the most common fatal genetic disease diagnosed in childhood. Children born with DMD cannot produce the protein dystrophin which is vital for muscle strength and function. Muscle weakness starts in early childhood. Many use a wheelchair by around the age of 12. As deterioration continues it leads to paralysis and early death, often in their 20s. It almost exclusively affects boys. There is no treatment or cure. In the UK there are around 2,500 boys affected and around 300, 000 worldwide. It is classified as a rare disease.
Who are Duchenne UK?
Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. As the leading Duchenne charity in the UK, we connect the best researchers with industry, the NHS and families to challenge every stage of drug development to make the incurable, curable. Together, we will find treatments and cures for this generation of patients with Duchenne.
Our president is HRH The Duchess of Cornwall. Our patrons include the broadcasters Krishnan Guru-Murthy and Mary Nightingale, and the sports stars Owen Farrell, Kris Radlinski and Andy Farrell.
We need your help, because we need to keep funding promising new research.
How to donate?
Duchenne UK is entirely reliant on donations to fund research for treatments and a cure to DMD. This can be done via:
- Direct Debit – Duchenne Direct
- Individual Donation – Donate
- If you are a family or friend affected by DMD you can set up your own fund with Duchenne UK – Family and Friend Funds
- Take part in one of our fundraising events – Events
- Text DUCHENNE to 70085 to donate £5. This costs £5 plus a std rate msg.
For more information visit www.duchenneuk.org
Published on 30 November 2020Share this article Categories Patient care & support