Battling Medical Chaos And Exhaustion?
Are you suffering medical exhaustion or overwhelm for you or someone you love?
It’s not your fault!
I help families who are in medically complicated situations get what they need
After 24 major surgeries (and 20 years to achieve them),
my own child born with a rare disease is thriving.
There’s a horrific medical maze to get through when you haven’t gotten diagnosed, or you have a rare condition.
Here are 5 things every family knows
who suffers that medical journey.
3. Bank – Are you suffering from medically induced financial chaos?
Medical expenses are the number 2 cause of bankruptcy in the U.S.With the right skills and preparation, this doesn’t have to be you. Gaining skills now can keep you financially safe later.
Our family faced bankruptcy twice. And yes, we had good medical insurance. Our insurance paid 90% of medical expenses (for context, Lazer’s first month of life was $100,000).
BUT they didn’t cover essential durable medical equipment like tracheostomy tubes, gastrostomy tubes, suction catheters, hoses for the trach humidifier, and the suction machine. We ended up paying $3000 a month for these supplies, on top of the high monthly cost of good insurance. The stress and fear of mounting bills were overwhelming, and we had our hands full getting nursing coverage, quality supplies, and trying to learn how to get her out of this situation! We were so overwhelmed!
My family financial difficulty is mild compared to many in our shoes. Learning the ropes early can help you avoid the kind of financial disaster that affects so many. Here’s how I can help:
- Identify sources of support with billing and insurance issues
- Understand how medical coding affects denial rates
- Challenge bills effectively
- Provide other crucial financial hacks
Take control of your financial health. Contact AdvocateAngel today to start navigating these challenges and secure your family’s financial future.
1. 1. Advocacy – You Are Your Own Best Advocate
“Doctors are human. They don’t know everything. But like they say, ‘A worried mom does research better than the FBI!’”
—mom to mom conversation in “Diagnosis”, Dr. Lisa Sanders’ Netflix/New York Times series.
Growing up, we believed doctors knew everything. They suffer from that, and so do we! Doctors can only work with the information they have, and sometimes critical pieces are missing. They should be valued partners on your journey, not infallible authorities.
Collaborative specialists or teams often have more experience with specific disorders than your current doctor or team. I can help you find these experts.
When researching Lazer’s condition, I discovered that the best team in my state had performed the same number of surgeries in 30 years as my current team does annually. For rare and complex surgeries, which team would you choose?
“I tell patients all the time: you might not think it, but your doctor wants you to get a second opinion if they’re not achieving results. Their ultimate goal is to help you.”
—Dr. Lisa Sanders, Yale Medical School, NYT, Netflix
There are clear, specific ways to determine if your doctor or team is the right fit for you. Let’s work together to ensure you get the care your family deserves. You can get a better handle on your skills by taking our free scorecard, or you can schedule an appointment to take the first step towards empowering your medical journey. Which option will you choose to take control of your health?
2. Backing: There Are Treks in Life You Just Don't Take on Your Own
Navigation through complex medical situations is a lonely journey, even with solid footing and good support. Please don’t try to go it alone!
- Do you have the support you need?
- Is there someone among your medical professionals, family members, or other community members who knows what you’re going through and believes you?
- Can they actively support you or would reinforcements help?
- >Do you have a support system?
We can’t make it on this journey alone. Being in a community of people who are going through what you’re going through can make all the difference.
Support comes in many forms:
- Family or Extended Family Support: Loved ones who are there for you emotionally and physically.
- Non-Profit Organizations: Groups that offer resources, financial aid, and advocacy.
- Support Groups: People who share similar experiences and can offer empathy and advice.
- Kindness of Strangers: Sometimes, unexpected support can come from the most unlikely places.
When my family was navigating our medical journey with Lazer, we found support in various places. Friends and family stood by us, non-profits provided essential resources, and we connected with other families facing similar challenges. Even though each support source fails on occasion, having this network of support was invaluable and made the journey more bearable.
You don’t have to face this alone. Let’s work together to build a support system that can help you navigate your challenges. Whether it’s connecting you with the right organizations, finding support groups, or simply offering a listening ear, we are here for you.
Reach out today to start building the support network you need. Together, we can make this journey less daunting and more hopeful.
3. Bank – Are you suffering from medically induced financial chaos?
Medical expenses are the number 2 cause of bankruptcy in the U.S.With the right skills and preparation, this doesn’t have to be you. Gaining skills now can keep you financially safe later.
Our family faced bankruptcy twice. And yes, we had good medical insurance. Our insurance paid 90% of medical expenses (for context, Lazer’s first month of life was $100,000).
BUT they didn’t cover essential durable medical equipment like tracheostomy tubes, gastrostomy tubes, suction catheters, hoses for the trach humidifier, and the suction machine. We ended up paying $3000 a month for these supplies, on top of the high monthly cost of good insurance. The stress and fear of mounting bills were overwhelming, and we had our hands full getting nursing coverage, quality supplies, and trying to learn how to get her out of this situation! We were so overwhelmed!
My family financial difficulty is mild compared to many in our shoes. Learning the ropes early can help you avoid the kind of financial disaster that affects so many. Here’s how I can help:
- Identify sources of support with billing and insurance issues
- Understand how medical coding affects denial rates
- Challenge bills effectively
- Provide other crucial financial hacks
Take control of your financial health. Contact AdvocateAngel today to start navigating these challenges and secure your family’s financial future.
4. Collaborative Healthcare Team – Excellent Medicine is a Team Sport!
I used to feel alone and frustrated driving long distances from one specialist to another, repeating medical history intakes over and over. It was exhausting. I felt like I was the only one holding all the pieces. Lazer’s wellbeing hung in the balance.
Imagine being a quarterback leading a team down the field without a huddle or clear signals. That’s what it’s like with a medically complex situation and doctors who have a short time to meet with you and limited or no time to communicate with each other except via chart notes.
Now, picture a team that huddles, shares clear signals, and works in sync. Touchdown!
With a collaborative team, specialists schedule you back-to-back at the same location (one-stop scheduling and one-point travel!), then sit together to forge solutions representing the best thinking from all specialties. Meetings where each specialist reports their findings build collective understanding of the person and problem and improve solution-making. Changing medical teams changed our life!
I can help you find the right Collaborative Team or Center of Excellence for your situation. Here’s what to look for:
- Number of specialists – more specialists mean better consideration of every part of treatment during team meetings
- Qualifications of individual members
- Experience of the members, how often the team meets, and how long they’ve worked together
- Location of the team – travel impact may be less even if the team is farther away due to unified trips
- Affiliation of team and members
- How the team communicates with you
Take the first step towards comprehensive, coordinated care. Contact me today to find the right team for you.
5. Diagnosis - If You've Gone Through the Journey of Trying to Get Diagnosed, You Know What a Nightmare It Can Be
My family experienced an odd kind of ‘luck’ with diagnosis: Lazer came into the world looking so obviously different that doctors knew right away they needed to pin down what kind of rare condition they were looking at.
However, this isn’t true for most families who face difficulties that aren’t immediately visible and whose descriptions could fit many different diseases.
Is this your story? If so, you are not alone. Millions of families in the U.S. are struggling with undiagnosed medical conditions. But here’s the good news: you have the power to shorten your own or a loved one’s diagnostic odyssey.
One in 10 people in the U.S. – roughly 30 million individuals – have a rare medical condition, whether they know it or not. The average time to diagnosis is an excruciating 5 years. No one should have to wait that long or go through it alone!
Without a diagnosis or with a delayed one, accessing proper treatment feels impossible. You find yourself going from one doctor to another, insurance denials stack up, and treatments are often off-label.
Taking the first step can be daunting, but you don’t have to do it alone. Let’s work together to uncover and understand your health challenges. With the right support, a clearer path to wellness is within reach.
Navigating the healthcare maze with an undiagnosed condition can feel overwhelming and lonely. We understand the fear and frustration that comes with every unanswered question. Let me be the guiding light on your journey toward clarity and solutions.
Contact AdvocateAngel today to take the first step toward finding the answers you need.
If you resonate with the experiences above, the
RareAware ScorecardTM can be your first step towards relief
It only takes a few minutes!
Get Expert Navigation Through the Healthcare Maze
I will help you...
- Find the right doctors and institutions
- Get the skills and tools to speed your path to diagnosis
- Master the steps necessary to decrease or delete bills if possible
- Connect with relevant communities that walk the same path as you
Yes, I Can Help Your Family with Their Rare or Complex Medical Challenges
You get a free 30 minute consultation and a free scorecard. Do the scorecard first, then meet with me. From these actions you get the first part of your game plan mapped out. You receive:
- The Scorecard results
- A video recording
- A written transcription of our meeting
I will provide the support you need. I offer assistance with everything from finding the right doctors and institutions and switching if you need to, to delivering skills and tools that speed your path to diagnosis, to help you understand medical jargon, to connecting you with relevant community that is walking the same path as you.
How It Works
I will simplify your healthcare journey in three easy steps
1. Schedule Your Consultation
2. Receive Expert Guidance
Get the support and information you need along with continuous guidance throughout your healthcare journey.
3. Empower Your Journey
Testimonials
“I first met Amy back in early 2004, when I was a new nurse and she was a new medical mom...
Seeing Amy at work advocating for and caring for her daughter, was very inspiring to me. It was a big part of what made me want to foster medically fragile kids. I saw her fight for her daughter, and I wanted to be a part of that fight too. Back in 2004, there were not many medically fragile children living at home, so Amy was one of the parents that blazed the trail for all of us who came after her.
Her experience, advocacy, compassion, dedication, diligence, organization, and skill at navigating our complex medical systems, will be of immeasurable benefit to anyone who is lucky enough to have her as a part of their team.”
“Amy and I both have children affected by the same rare medical condition in which we have fought alongside to make things easier for the next family in the same situation.
Amy has been recruited by top focused medical teams in our rare community because of her personal expertise. Through her work and collaboration, she has gone on to help launch medical research that is relevant to parents of children who are struggling to navigate their way through the medical system. It's incredibly important to have others ahead of you on the journey you travel, a special someone who can be there to shine a light on a rare cause and help guide the next steps for someone else. . .
Amy is an invaluable team leader who makes a difference by truly changing lives!”
I provide expert navigation through the Healthcare Maze
I’m Amy Schefer. As a mother of a child with a rare disease and an educator for 25 years, I have firsthand experience navigating the often treacherous waters of the healthcare system. My journey has been one of resilience and determination, having supported my child through 24 surgeries, culminating in their current thriving health.
In these experiences, I have met countless families who are in dire need of reliable information and effective solutions. Seeing their struggles has deeply impacted me and intensified my drive to create meaningful change. My personal connection to this community ensures that my expertise is empathetic, practical, and impactful.
There are so many skills we are never taught to navigate circumstances like this, that we never anticipated. I will teach you these skills!
I understand the emotional toll of medical challenges, and I’m dedicated to supporting you every step of the way.
“Globally, an estimated 300 million people are living with rare diseases, with nearly 50% experiencing diagnostic delays or misdiagnosis.”
National Organization for Rare Disorders (NORD) Survey , August 2024
“They call it delays or misdiagnosis. We call it the endless nightmare of uncertainty.” – Amy
I am experienced with both sides of the struggle you are going through
Consultant and Advisor to the following Advisory Boards:
My Medical Journal Contributions
“40% of patients saw three or more doctors before receiving a correct diagnosis. 10% saw more than ten doctors before receiving a correct diagnosis.”
National Organization for Rare Disorders (NORD) Survey , August 2024
The following is my fee structure. If these fees are untenable for you,
I am affiliated with a nonprofit who will help you with your enrollment fee.
Bronze Package
(Starter)
Ideal for those wanting an introduction to my coaching
-
4 Sessions
(45 min each): Weekly or bi-weekly -
Email Support: Basic
-
Materials: Access to a few key resources or worksheets
Silver Package
(Growth)
For clients who are ready to go deeper and see consistent progress
-
8 Sessions
(45 min each): Weekly or bi-weekly -
Email Support: Priority
-
Materials: Comprehensive access to resources and worksheets
-
Bonus: One 15-minute emergency call
Gold Package (Transformation)
Designed for clients committed to significantlong-term transformation
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14 Sessions
(45 min each): Weekly or bi-weekly -
Email Support: Premium, with guaranteed 24-hour response time
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Materials: Full access to all resources and worksheets.
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Bonus: Two 30-minute emergency calls
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Exclusive: One personalized action plan after the first month
Additional Offers
- Early Bird Discount: Discount of 10% for those who sign up for the Silver or Gold package within 48 hours of their free consultation.
- Referral Program: One session free for any referral that leads to new clients.
- Bundling: Combine coaching with additional resources like eBooks, online courses, workshops, or mastermind/group coaching.
- Customizable Plans: Add extra sessions or specialized support to any package at a lower incremental rate.
- Coaching by the hour: $167 – offered in increments of 15 minutes.
- Group Coaching by the hour: $100/hour (per person)
Our Journey, Our Story
MyFace Podcast
S3E37 | Taking Control of the Narrative
“Two in a Million- what if you were born with a condition so rare, you had never met another person like you”
S1 E3 – A Face Like Mine
April 19, 2016 – 42min
Born with Goldenhar Syndrome, Austin, 15, and Elena, 12, have both been bullied for looking different and feel isolated from other kids. Will meeting bring them the friendship they crave?
This episode is available on Amazon Prime Video
MyFace Podcast
S2E14 | Advocating For Your Child: A Parent’s Perspective
Advocating for your child with a cleft lip/palate or craniofacial condition can be challenging, but it has a critical impact on your child’s outcomes. Our panel of parents will share their personal experiences and offer advice on what has worked and not worked when it comes to advocating for their child. In this episode, you will hear from parents who have helped their children navigate and overcome bullying, supported their children through medical procedures and surgeries, and who have fought – and succeeded – to get their children the services they need, including speech therapy, in-school nursing care, and more).
myFace’s Dina Zuckerberg sat down with guests, Lenica Bruce, Amy Schefer, and Max Singer, as they share their experiences.
CARE in Craniofacial Microsomia
In this episode, we are joined by some of the members of the CARE project team. CARE stands for Craniofacial Microsomia: Accelerating Research and Education and is aimed at investigating the psychosocial impact and healthcare burden of Craniofacial Microsomia.
CAR’s own Dr Nicola Stock (Associate Professor), Dr Alessia Johns (Paediatric Psychologist, Children’s Hospital Los Angeles), Lazer Schefer (Patient advocate), and Amy Schefer (Parent advocate) join Maia to discuss this exciting project and the importance of conducting impactful research into rare conditions.