March marked a special milestone at Action Duchenne as we kicked off our brand-new webinar series! Each month, we are diving deeper into the important themes related to Duchenne muscular dystrophy (DMD) care, and we could not have asked for a better start. We were incredibly fortunate to have the brilliant Professor. David Schonfeld joined us for a two-part series focusing on coping with diagnosis and navigating through grief and loss that comes with Duchenne.
The webinars, led by Prof. Schonfeld, offered a clear and compassionate exploration of the intricacies surrounding a DMD diagnosis. His expertise and empathetic delivery made these sensitive topics both accessible and relatable.
Part One: Coping with Diagnosis and Starting the Conversation
In our first session, David guided us through the often-daunting task of talking to children about their diagnosis. He reminded us that open dialogue and honesty are key; “The best time to inform children is when you find out, the second-best time is now”.
Here are some of the key takeaways that really resonated with us:
- Open and Honest Dialogue: David stressed the importance of starting these conversations early, recognising that children cope better when they feel they understand what’s happening.
- Tailored Approach: He reminded us that every child is different. The amount of information shared should be tailored to their developmental age, personality, and coping style.
- Sibling Support: Recognising the impact of diagnosis on siblings and ensuring their emotional needs are addressed.
- A Journey, Not a Destination: Talking about DMD is an ongoing process. It is about starting a dialogue that will continue and evolve over the years.
Part Two: Understanding Grief and Loss
The second webinar tackled the delicate subject of grief and loss, a topic that’s often difficult to discuss but incredibly important. David helped us recognise and process the various forms of grief associated with a DMD diagnosis.
We explored concepts like:
- Loss of the “Idealised Child”: Acknowledging the dreams and expectations that may shift after a diagnosis.
- Cumulative Loss: Recognising the ongoing nature of multiple losses associated with a multifaceted and progressive condition.
- Ambiguous Loss: Accepting that some losses lack clear conclusion or closure which can make it harder to navigate and move forward.
- Anticipatory grief: The importance of understanding that feelings of grief can arise when facing future challenges. This allows people to experience graduated feelings of loss before the loss has occurred.
David emphasised that grief can be for losses that are both real and perceived, and that it is OK to grieve these losses. He also talked about how everyone grieves in their own way, and at their own pace, and that is perfectly normal – members of family may proceed with anticipatory grieving at different rates and times.
We are extremely grateful to David for hosting these webinars and for facilitating such important discussions.
The great feedback received by the attendees and high registration rate showcases the impact of and need for the webinar. A total of 30 families registered to the event to receive great insights and learn about coping with the diagnosis. 100% of the surveyed respondents rated the quality of the webinar as high.
A Community of Support and Understanding
We were absolutely thrilled to see so many of you join us for these webinars. Your participation and engagement made these sessions even more meaningful. The feedback we received was overwhelmingly positive, with many families expressing how much they appreciated David’s insights and compassionate approach.
These webinars are more than just information sessions; they’re a chance for our community to come together, share experiences, and find strength in each other. We believe that by fostering understanding and open communication, we can empower families to navigate the challenges of DMD with resilience and hope.
We’re so excited for the upcoming webinars in our series, and we hope you’ll join us!
Save the date
Wednesday, 23rd of April @ 18:00 (GMT)
Theme – Neurodiversity in DMD – Managing Difficult Behaviours
Speaker: Dr James Poysky
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