“Donna Sullivan on Rare Disease Advocacy and the Fight Behind Complicated”

In this emotional and revealing interview, Donna Sullivan shares how her experience as a mother to children with Ehlers-Danlos Syndrome (EDS) led her into full-time advocacy. When her children faced chronic pain, misunderstood diagnoses, and rejection from hospitals, she realized the problem was bigger than her own family. Families across the country were being dismissed, misdiagnosed, and even accused of medical child abuse when seeking help for rare conditions. After witnessing the tragic suicide of a fellow advocate, Donna knew the silence had to end.

She discusses how she joined forces with director Andrew Abrahams to create Complicated, a feature documentary that follows four families over nine years. The film captures the medical, legal, and emotional crises that unfold when rare diseases is poorly understood. It also reveals the institutional arrogance and systemic failures that compound the suffering of already vulnerable children. Donna explains that the goal of the film is to educate doctors, empower advocates, and give a voice to families who have been ignored or harmed by the very system meant to help them.

Now, Donna is building a nonprofit and launching an impact campaign to bring Complicated into medical schools, hospitals, and advocacy groups. She encourages screenings, open discussions, and partnerships with institutions ready to learn and do better. With a background in journalism and a heart for change, she is pushing to make this a turning point in rare disease care.

References and Resources Mentioned:

• Complicated, produced by Open Eye Pictures (openeyepix.org)
  
  
  
• The documentary Take Care of Maya on Netflix
  
  
  
• Under Our Skin, directed by Andrew Abrahams
  
  
  
• Ehlers-Danlos Syndrome information (ehlers-danlos.com)
  
  
  
• Complex Regional Pain Syndrome resources (rsds.org)
  
  
  
• Postural Orthostatic Tachycardia Syndrome (dysautonomiainternational.org)
  
  
  
• Coalition Against Pediatric Pain (tcapp.org)
  
  
  
• Connective Tissue Coalition
  
  
  
• Pathways to Trust
  
  
  
• Pharmacogenetics in pain medicine
  
  
  

For screenings or to support the mission, visit openeyepix.org and reach out through the contact page.