With advocacy and coaching, Patti DeMuri brings passion to fighting for better health care and compassion for people suffering from rare diseases.
Patti DeMuri moved to Estes Park and has brought with her a passion for helping those slipping through the cracks in our medical system.
Originally from Wisconsin, she moved to Colorado 4 years ago, mainly because of medical issues and the benefits of the weather here in Colorado. She moved to Estes recently after finding she was spending most of her time in Estes Park.
She was originally worked in the biotech industry as a programmer with a company that created molecular biology software, where she was a project manager for 25 years.
That all changed after her daughter was diagnosed with eight rare diseases. As DeMuri spent more and more time caring for her daughter, it no longer made sense to continue working for that company.
So like many other mothers of children suffering from disease, she became a 'medical mom' and began diving more into researching her daughter's rare conditions than the doctors treating her daughter. A want drove her to help her daughter find ways to lead a better life and find the right doctors.
At the time, DeMuri was married to a pediatric and infectious disease specialist. Even he could not understand how his friends and colleagues that were medical professionals could not help.
"How do you understand the medical system enough to understand the doctors' perspective enough to build that bridge with them and try and get what you need in a medical system that is broken and not set up to help us?"
This led DeMuri to understand that the medical system was not set up for rare and chronic or complex medical issues even when professionals in that system wanted to help.
DeMuri took this understanding and decided she wanted to help other parents and families navigate similar issues she had already been through. So she became a life coach for parents and families. She quickly realized that everything she had been learning about relationship dynamics as a coach applied to patients' relationships with their healthcare providers.
As her daughter became an adult, DeMuri began teaching and coaching her with interactions with doctors helping to build better relationships. DeMuri is now teaching those strategies to others.
"How do you understand the medical system enough to understand the doctors' perspective enough to build that bridge with them and try and get what you need in a medical system that is broken and not set up to help us?" DeMuri asks about interacting with the medical system.
DeMuri has now moved her advocacy and coaching work online with a website she has launched to help get this information out in a broader way.
"We all need to be better educated. None of us were ever taught how to handle the medical system. I have the perspective of being able to say I understand how they (medical professionals) were trained." DeMuri says of the need for this type of teaching.
She gives the example of when going to a doctor's appointment and you are asked how you are doing today. The providers are really asking you what your chief complaint is. But we don't necessarily know that as patients. We don't know how to answer that question can help with communication and better represent yourself and share what is truly important for the providers to know. This communication can help a patient become a true partner in their own health care.
DeMuri has launched a website where members can attend monthly online workshops, where they focus on different aspects of the medical system helping her members get better care.
She hopes to expand this coaching and advocacy work into the real world in the Estes Valley Community.
Her best advice to anyone needing medical care is to always bring someone with you to every appointment or ER visit. Their advocacy can make a big difference in the level of care.
While her new project is still very much in the beginning stages, she reports that her clients see significant changes in the quality of their health care and ability to handle the medical system calmly and confidently.
You can find more information on the work DeMuri is doing on her website: www.healinghugshaven.com. She also has a free Facebook group you can join by searching for 'Healing Rare Disease Health Care.'