Presenting Duchenne to our future physios

Our vision is very clear, a world where lives are no longer limited by Duchenne muscular dystrophy. In our ongoing work to achieve this vision, along with funding cutting edge research into potential treatments for all, and supporting our families, we shout very loudly about life with Duchenne; relishing opportunities to advocate to a range of parties, from politicians to influencers, students to healthcare professionals.

Impactful

We know that hearing from a person living with Duchenne, or a Duchenne parent resonates so strongly with the people we present to, and is incredibly impactful. We also know that it is people who make the changes to society that will make life better for our children, young people and adults living with Duchenne muscular dystophy. We know that better standards of care are improving the long-term prognosis for adults living with Duchenne and, in combination with advancements in research and medicines, we as a community can feel more hopeful for the future.

With this in mind, Lynnette, our Community Fundraising & Support Officer donned her advocacy and campaigning hat and presented ‘life with Duchenne’ this week. Lynnette had been invited back for the second time by Danielle Ramsey, Senior Lecturer at Hertfordshire University to present to Danielle’s second year Physiotherapy students.

Compelling content

Lynnette’s hour long presentation reached two groups of 30 students, and she talked about a number of topics, including;

• The real-life impact of Duchenne on families and young people
• Explaining how potentially important each of the students could be in helping a family experience a well-handled, professional diagnosis
• Her son’s diagnosis and her experience during that time
• The powerful impact on the family of having a professional, caring and well-managed diagnosis, and how to achieve this as a healthcare team
• Duchenne muscular dystrophy early indicators, such as frequent trips and falls, delayed milestones, parents concerned something is wrong, leg pain and cramps, inability to jump/hop, large calves, raised Creatine Kinase (CK) levels, learning differences, Gower’s manoeuvre, difficulty stair climbing, sleeping problems, and the rarer indicators such as inability to whistle and facial muscle weakness
• How Duchenne indicators may look like other conditions and how each child presents differently, some may present one or two indicators and some may present more.
• Emphasising how the families feel after diagnosis and beyond
• Explaining the number of other departments and healthcare professionals the families have appointments with,which can be very overwhelming
• How important the student’s future work will be in helping give confidence to families, to help them understand the stretches and their impact in the long term
• The standard interventions which are used in Duchenne muscular dystrophy, such as AFO’s, special seating, wheelchairs etc
• Clinical procedures which are often needed such as tendon release and spinal surgery
• The psychological effects of Duchenne on parents, siblings and people living with Duchenne muscular dystrophy

Lynnette’s presentation was received extremely well by the students and Danielle will be inviting her back to speak to next year’s cohort.

Testimonial

Thank you so much to Lynette for coming in to share her journey with Duchenne with our physiotherapy students. 

The power of the patient voice is so very important, and for our next generation of physiotherapists having a greater understanding of the person and their family, not just the condition, and getting a greater insight into what matters to them is so crucial in our quest to deliver the highest quality of care to people with Duchenne, and their families. 

It was really such a valuable session which all of our students really enjoyed, so much so that even when the fire-alarm went we carried on the discussions out in the sunshine, and a number of our students are hoping to head to the Action Duchenne Conference. 

Thank you again Lynnette and we are looking forward to having you back next year for the next cohort of students.

Danielle Ramsey, Senior Lecturer & SecondYear Tutor – Physiotherapy
University of Hertfordshire

We can help you

As part of our ongoing campaigning and advocacy work, our team regularly go out to present to groups, help parents advocate at school, and speak at events. If you would like us to help you, please get in touch info@actionduchenne.org.

Everything under one roof

At the Action Duchenne International Conference, there is everything you need to know about Duchenne, whatever stage of your journey you are. From sessions to help newly diagnosed families, to transitioning to adult services, there really is such a large range of topics and we’re so proud to bring the sessions to you in 2 weeks time. Check out the agendas below and book your tickets now.