"I believe life with chronic illness is hard enough without having additional issues working  with your  medical team."                            —Patti DeMuri 

 

 

 

Alone we can do so little;Together wecan do so much. (1)

"How To Create Your Medical Dream Team" Program

For families facing chronic illness who want to improve their health and quality of life through partnering with your providers

 

Do you struggle to get the medical care you need? Our medical system is not designed to handle patients with complex issues and chronic, rare diseases.  Short appointments and long waits mean rushed doctors who don't know how to help. 

Rare diseases, like mitochondrial disease and ehlers danlos syndrome, that few doctors know about lead to patients not being believed and listened to.  

In my six week MDT program, you will learn how to work with your doctors to create a collaborative medical team, so your team can focus on and handle the issues that are most important to you.   You and your team will be able to create care plans for the ER and hospitalizations for better, more consistent care.  

You will gain knowledge and experience to comfortably and confidently handle any medical situation.   If you are committed to working with your medical team to improve your health, this is the place to begin.


Enjoying the life together

How Much Would Your Life Improve If You ...

* Could relax about the future because of your confidence in your
collaborative, caring, medical team
?

*Felt comfortable communicating with your doctors?

* Could facilitate communication between your doctors?

*Knew how to share your most important
health concerns
with your medical team?

*Had ER and hospital plans in place to handle any situation?

Knew how to handle issues within the
medical system (ER, hospital and more)
?

You can improve your health and quality of life
by partnering with your medical team.

 

Your Medical Team
Your Medical Team

 

Topics covered include:
Your Medical Team (what/who you need, how to decide)
Family Values and Goals (priorities, communication)
Talking to your Doctor (personalities, question templates)
Appointments  (parts of, sharing agendas, care plans)
Medical Records (how to get copies, what to bring and when)
Communication between Doctors (notebooks, etc)

About Me

Patti and Becca
I'm Patti DeMuri, the founder of Healing Hugs Haven.  My young adult daughter, Becca, has multiple rare, chronic illnesses including eosinophilic esophagitis(EoE),
celiac disease, Ehlers Danlos Syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), vocal cord dysfunction(VCD), disaccharidase enzyme deficiency and mast cell issues.
 
My unique perspective on the medical system comes from supporting a spouse through medical school, residency, fellowship and a teaching/clinical position at a medical school.
 
My love of science and programming, lead me to 20+years working for DNASTAR Inc, a molecular biology software company as a project manager and programmer.  Within this setting, I have been a participant and a fascinated observer of the growth of  the genetics field, from $100 million dollar human sequence to NextGen sequencing at a $1000 per genome.  As a member of the rare disease community,  genome research brings hope of understanding, diagnosis, treatment and a cure.
 
Healing Hugs Haven is the combination of my experience as a medical mama, coaching, team building and relationship skills, my insights and understanding of the medical system plus my science knowledge.  My goal is to help other families living with chronic illness learn, relate, heal and grow.  

When You Have Completed This Course You Will ....

Testimonials

Course Material

  • I love and appreciate what you're doing for people like me. I really wish I'd found a resource, like what you're offering, a decade ago...I know it would have made our journey look different had I had the info and support you provide early on in our medical advocacy process-with each of our family's various issues. So, thanks for all your doing and the heart you have behind it!
  • It helped remind me of the importance of setting clear action points for most appointments. It also taught me that it is important to provide doctors information in the format they are trained to receive it in--working from their perspective helps them hear my perspective.

Group Q&A Coaching Call

  • Dealing with chronic illness or rare disorders feels isolating, exhausting and challenging and it takes creative and problem solving thinking. Meeting with others in similar shoes helps make you feel not alone while coaching helps remind you of your goals, the possible solutions and best processes as well as new ideas. I enjoyed the companionship of the coaching class. I think what did change was being reminded to choose to look at the whole process a lot more like a business rather than (being) personal. The major benefit of being part of such a group is hearing that I am not alone in this and that some of the unbelievable stories and lack of best care stories are not unique to me--thus it is not me that is the problem but a breakdown in the process or a wrong "business" fit.

Pricing

Basic
$97

6 Weekly Educational Videos

Slides, documents and resource lists

Private class forum to ask questions and
share tips or ideas (moderated by Patti)

Bonus Week #1: Medical Records -
The Good, Bad and Ugly

Bonus Week #2: Patient Advocacy

8 Weekly Group Q&A coaching call
(Live and Recorded)

Pro
$149 ($297)

6 Weekly Educational Videos

Slides, documents and resource lists

Private class forum to ask questions and
share tips or ideas (moderated by Patti)

Bonus Week #1: Medical Records -
The Good, Bad and Ugly

Bonus Week #2: Patient Advocacy

8 Weekly Group Q&A coaching call
(Live and Recorded)

**Private Brainstorming Session

Curriculum

Week 1:  Why you need a medical team?
Week 2:  Diagnosed:  What now?
Week 3:  Deciding what's best for your family.
Week 4:  Preparing for your Appointment
Week 5:  How to talk to your doctor
Week 6:  Managing your medical team

 

Bonus 

Week 7:  Medical Results - The Good, Bad and Ugly
Week 8:  Patient Advocacy

FAQs

 

»  Is it really worth the $297 amount?

What is your health worth to you?

  • For the cost of a doctor's appointment or a prescription, you get tools, resources and the support needed to change your healthcare and your life!
  • You could hire a Patient Advocate to work with you.  According to the New York Times article, hiring a Patient Advocate to assist you costs $150-$200 per hour.

What is your time and energy worth to you?

  • Not only will the resources and information save you time and energy, it will transform your relationship with your doctors into a collaborative, partnernship.
  • Say 'Good-bye' to wasted appointments where nothing is done or worse yet, the appointment is counter-productive to your goals.

Being a confident partner in your caring, collaborative, medical team - PRICELESS!

 

»   How is this different from advice I get from websites, friends or groups on Facebook?

  • This course contains tools and techniques, to collaboratively work with your medical team.  These tools and techniques have been tested and refined.
  • Unlike more informal sources, you receive accurate information from trusted sources.
  • This course is much more than one more website with advice on dealing with your chronic illness.  It's a confidential, supportive environment where you work along with others in a small group environment, on making real changes in your healthcare situation, using proven tools and getting coaching and help all the way

Provides structure and supports you through a paradigm shift in how you approach and handle your healthcare!

 

»   Basic vs Pro?

Basic

  • Basic provides the tools and techniques to teach you about building and managing your medical team.
  • Access to a moderated forum to ask questions and share ideas.

Pro includes Group Question & Answer Coaching Calls.

  • Each weekly, ninety minute call provides additional teaching and coaching.
  • Includes a weekly check-in and the ability to work through issues.
  • Powerful, group based brainstorming and problem solving which leverages our varied backgrounds.
  • Allows learning from hearing how others approach challenges.

What if I am unable to attend the calls live?

  • Each call is recorded and available as an .mp3 on the website.
  • Questions can be entered in the forum that will then be answered on the live call.
 

Register Now

 

Feel free to contact me at patti@healinghugshaven.com if you have any questions or comments.

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