Donna Sullivan on Rare Disease Advocacy and the Fight Behind Complicated: The Movie
Click HERE to view this podcast episode of Patient Advocacy Now!
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 parent, 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 are 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 (ELEVATE RARE) 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.
Interested in hiring Donna as an Independent Patient Advocate? Find her listing here!
References and Resources Mentioned:
- Complicated The Movie: Now Available for Non-Profit Educational Screenings, and Follow Us on Facebook; produced by Open Eye Pictures (openeyepix.org)
- ELEVATE RARE (launching in October) https://elevaterare.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.
