DMD Care UK: Adrenal Insufficiency, Bone & Puberty Information Leaflets & steroid dependent wristbands now available
As part of our DMD Care UK launch this week, we are pleased to share our first two information leaflets:
You can also view and download them here: https://dmdcareuk.org/
These leaflets provide the care recommendations for these treatment areas, as agreed by our working groups.
We’re also launching the steroid dependent wristbands to accompany the Adrenal Insufficiency Information Leaflet.
The wristband is designed to alert people that the wearer is steroid dependent and may need to be given steroids if they become unwell.
They also share the link to the Duchenne Emergency website that will allow healthcare professionals to access information immediately relevant to Duchenne Muscular Dystrophy.
Click here to order the wristband.
Experts from the Adrenal Insufficiency, Bone & Puberty working groups will be explaining the care recommendations in the leaflets during our webinar on Monday 19th October at 1pm.
Please register here: https://us02web.zoom.us/
We would like to thank all those involved in the working groups to develop these leaflets: Dr Jarod Wong, Vici Richardson, Dr Talat Mushtaq, Dr Claire Wood, Dr Moira Cheung and Dr Harshini Katugampola.
We would also like to thank the Clinical Committee of the British Society for Paediatric Endocrinology and Diabetes for their input.
If you have any questions, please email [email protected].
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 15 October 2020Share this article Categories Patient care & support