41. Connection between ADHD, EDS and POTS: Vanessa’s journey through chronic health challenges

ADHD Mums

In this episode of ADHD Mums, I chat with Vanessa Anlezark, a 39-year-old Registered Nurse and Mum, about her experiences managing chronic health conditions, including EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome).

Vanessa's journey highlights the importance of self-advocacy, finding the right healthcare team, and connecting with a supportive community. Her story sheds light on the realities of navigating multiple diagnoses and the resilience it takes to manage neurodiversity alongside chronic conditions.

Key Takeaways:

• Understanding EDS and POTS: Vanessa breaks down what Ehlers-Danlos Syndrome and POTS are, explaining their impact on the body and their connection to neurodivergent conditions like ADHD and Autism.
• The Diagnosis Journey: With no genetic markers for hEDS, diagnosis can be difficult. Vanessa discusses the 2017 diagnostic criteria, the challenges of misdiagnosis, and the empowering nature of knowledge, even when no cure exists.
• Advocacy in Healthcare: From facing medical gaslighting to seeking specialised care, Vanessa shares practical advice on advocating for yourself or loved ones in the healthcare system.
• Finding Support and Community: Vanessa emphasises the importance of connecting with others, whether through online support groups or specialists knowledgeable in hypermobility and autonomic disorders.
• Self-Diagnosis and Validation: For those struggling to get an official diagnosis, self-diagnosis can still provide validation and help in managing symptoms effectively.

Mentioned Resources:

• The Ehlers-Danlos Society – Visit Website
• EDS Diagnostics 2017 (Note: This criteria can be used by any doctor for diagnosis) – Visit Website
• The Dysautonomia Project – Visit Website
• The Australian POTS Foundation – Visit Website
• Mast Cell Action – Visit Website
• Mast Attack – Visit Website
• Mast Cell Activation Syndrome & Dysautonomia - Dr. Lawrence Afrin – Watch Video

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EXTRA RESOURCES:

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