Rare Disorder or Misdiagnosed? How an Independent Patient Advocate Can Help

Given a diagnosis that doesn’t seem right for you? Maybe your symptoms don’t add up to what your doctor told you? Or… perhaps you were diagnosed with a rare disease and not offered much treatment or support.  If this sounds all too familiar, then continue reading...

Sadly, this happens far too often.  Why? Well, there are many reasons why this may occur:

1. Medicine is an art, and doctors and other healthcare providers use examination and tests to lead to a diagnosis that best fits the puzzle. Sometimes the answer is not exactly black and white. Every human is unique, and many times so are their symptoms. Patients do not always fit the diagnostic algorithm.  

2. The demands of today’s fast-paced healthcare system leave little time for healthcare providers to spend hours investigating each patient’s unique case to figure out the best outcome.  Unfortunately, office visits are often crammed into 15-minute or shorter timeframes; patients are squeezed in at the last minute, perhaps double-booked, and facilities are short-staffed. The struggle is real! Even when healthcare providers want to dedicate the extra time to dig deep into your specific case, the healthcare system's logistics make it nearly impossible.  While some hospitals hold scheduled meetings where challenging cases are discussed among specialists, this does not occur in all hospitals and is especially rare in primary care offices. While patients may be referred, as needed, to the appropriate specialists in their area of need, this does not always happen.

3. The complexity of medicine is another reason that misdiagnosis occurs or rare disorders are inadequately managed. There are constant ongoing advances in technology and research, and new diagnoses are being discovered.  Every healthcare provider can't keep up with every advancement. 

How It Affects You, The Patient
Despite the many reasons people are misdiagnosed or undermanaged, the outcomes are essentially the same.  The patient is often left with feelings of defeat, exasperation, exhaustion, abandonment, anhedonia, and depression.  Any one of these alone is a horrible feeling. So what do you do?? This is where an Independent Patient Advocate can help.

What is an Independent Patient Advocate

An Independent Patient Advocate is an experienced healthcare professional who provides unbiased assistance to help navigate your path to better health and achieve your personal goals. An Independent Patient Advocate does not work for an insurance company or hospital; therefore, their priority is you.     

How can an Independent Patient Advocate help in a situation of misdiagnosis or rare diagnosis?

An Independent Patient Advocate can help in several ways.  To highlight just a few:

Experience
It is vital to find an Independent Patient Advocate with experience representing patients who have been misdiagnosed or have a rare disorder.  Advocates with this experience may already have worked with clients similar to you and have a deeper understanding of the situation.  

Ideally, a rare disease/disorder patient is able to find several advocates who have deep knowledge of that condition and its comorbidities, so that you can choose one who best fits your specific needs. Intimate knowledge of your particular condition can make a radical difference in your learning curve, time to diagnostics/treatment, and so much more.

Saving time and money
With an atypical diagnosis, time is of the essence. Often, the sooner you can find a proper diagnosis and good management plan, the better chance you will have in managing symptoms, treatment, and quality of life.  An Independent Patient Advocate can efficiently help you find the resources you need, as they have the processes and tools to do so. In the end, this will save you both time and money.  

Personal Support
With an Independent Patient Advocate, you are not going through this challenge alone.  An Independent Patient Advocate is here to walk alongside you and assist you on your path. Even if you are fortunate enough to have family or friends by your side, it is comforting to know that you have your very own Independent Patient Advocate with you looking out for your best interests. Your Independent Patient Advocate can take some of the worry off your shoulders, so you can spend quality time with the people and things you enjoy. The healthcare system is challenging, but you don’t have to go through it alone.  

Bio: Dr. Elena Borrelli DMSC, MS, PAC, BCPA is the founder of Pathway Patient Advocates. She has over 20 years of experience in the medical field, spanning both clinical and administrative roles. Dr. Borrelli has experience in a variety of healthcare settings. Her primary focus is to assist clients who are dealing with chronic conditions, rare disorders, cancer, or undiagnosed symptoms.  To learn more, visit Pathway Patient Advocates' website at pathwaypa.com, give hera call at (947) 517-8395, or email advocate@pathwaypa.com. 

At Pathway Patient Advocates, you have access to not 1 but 2 patient advocates with separate specialties; therefore, your advocates are experienced not only in the medical aspect of healthcare but also in the administrative side, including insurance and billing.  These experienced patient advocates can help you locate providers and resources that best address your specific situation and do so in the most cost-efficient way for you.