Donna Sullivan
DMSConsultingRI
Donna Sullivan
DMSConsultingRI
Advocate Location
North Kingstown , RI 2852
Specialty
Medical Guidance
Other Services
Survivor Support
TeleAdvocacy Available
Offers FREE Initial Consultation
*Greater National Advocates Terms of Use Apply
How I Can Help
I empower people living with EDS, chronic or acute illness, undiagnosed conditions, pain and disability to take more control of their medical situation, heal from trauma, build better quality of life and thrive. I am especially experienced in supporting kids and families living with chronic or complex pain. I also support medically complex pediatric patients and families who have come under CPS investigation.
* Understand the unique challenges of The Ehlers Danlos Syndromes and CTD.
* Guidance for parents: How to Navigate EDS and Chronic Pain Management
* Connect with knowledgable medical providers and gain access to a curated and "EDS aware" network of medical professionals who are experienced in EDS, HSD,POTS, GI,Pain Management, MCAS and more.
* Preparing for appointments
*Medical decision making support
* Personalized wellness strategies
* Support from someone who "gets it."
* Understand the unique challenges of The Ehlers Danlos Syndromes and CTD.
* Guidance for parents: How to Navigate EDS and Chronic Pain Management
* Connect with knowledgable medical providers and gain access to a curated and "EDS aware" network of medical professionals who are experienced in EDS, HSD,POTS, GI,Pain Management, MCAS and more.
* Preparing for appointments
*Medical decision making support
* Personalized wellness strategies
* Support from someone who "gets it."
Important Information About Me
- I offer a FREE Initial Consultation
- I offer TeleAdvocacy Service
- My geographical area of practice is Rhode Island & Telehealth Support
My Survivor Support Advocacy Qualifications
I am a survivor of Ehlers Danlos Syndrome, POTS, Dysautonomia, Mast Cell, Scoliosis, Tethered Cord, Complex Regional Pain Syndrome, Post Traumatic Stress Disorder, Endometriosis, Chronic Pain, Type 1 Diabetes, Gastroparesis
As a mother of three children living with Ehlers Danlos, Complex regional pain syndrome and an entire alphabet of diagnosis, I have lived the best and worst of medicine. My personal experience combined with my advocacy work with families has taught me a lot about how to build medical teams, prepare for appointments, communicate with providers, navigate medical decision making, manage insurance challenges and somehow still find balance in wellness even in uncertain or traumatic times.
Why I Became A Professional Health Care Advocate
My unexpected journey began in 2011 when EDS was not widely recognized. I realized very quickly the many complicated challenges that my family was facing because of the lack of medical awareness and the fact that our overspecialized healthcare system is not built to meet the needs of people who have multi-system diseases.
We spent nine years in various hospitals averaging 9-13 weeks a year inpatient. We had to travel for care to find experienced specialists and were financially broken and emotionally traumatized. We found strength in community and a network of researchers and physicians that helped to put our pieces back together. I also was fortunate to find a group of EDS parents who had started The Coalition Against Pediatric pain and through that organization, I volunteered supporting other families who were also navigating as outsiders in medicine. These experiences taught me a lot about the strengths and weaknesses in our healthcare system and showed me that it is possible to thrive in spite of illness.
I began working with other non profits including The EDS Society, The Connective Tissue Coalition (EDS research) and Pathways To Trust (medical education). I new medicine could do better and I wanted to help people avoid being sidelined and losing years just because they could not access the care that they required. Today I have a documentary film, Complicated, that seeks to educate about the fact that EDS IS a serious condition that deserves serious research money, and support for patients. I hope when the new diagnostic criteria comes out that I will no longer be needed for the type of complex advocacy work that I do. :)
We spent nine years in various hospitals averaging 9-13 weeks a year inpatient. We had to travel for care to find experienced specialists and were financially broken and emotionally traumatized. We found strength in community and a network of researchers and physicians that helped to put our pieces back together. I also was fortunate to find a group of EDS parents who had started The Coalition Against Pediatric pain and through that organization, I volunteered supporting other families who were also navigating as outsiders in medicine. These experiences taught me a lot about the strengths and weaknesses in our healthcare system and showed me that it is possible to thrive in spite of illness.
I began working with other non profits including The EDS Society, The Connective Tissue Coalition (EDS research) and Pathways To Trust (medical education). I new medicine could do better and I wanted to help people avoid being sidelined and losing years just because they could not access the care that they required. Today I have a documentary film, Complicated, that seeks to educate about the fact that EDS IS a serious condition that deserves serious research money, and support for patients. I hope when the new diagnostic criteria comes out that I will no longer be needed for the type of complex advocacy work that I do. :)
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