How to Create a Comprehensive Care Team to Manage Scleroderma

Why it helps to have all your specialists communicating with one another

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by Amy Gietzen |

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My experience with scleroderma has been a mashup of hot and cold emotions, physical highs and lows, and an eye-opening educational experience for both my support system and me.

At times I’ve felt completely alone and scared about my future, and specifically how my health was going to look moving forward. There have also been moments when I felt so strong and capable. With the help of my physicians and caregivers, I was able to make educated, critical decisions about my health and medical treatment.

I believe if you’re living with scleroderma, you need to concentrate on your disease as a whole. If you want any kind of improvement in your health, prevention is essential to have the best and most complete, effective care. I made sure I enlisted a cohesive, collaborative team of healthcare professionals, which is how I survived and continue to thrive with scleroderma.

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Finding the right plan

Normally, if you fall ill, you go to a doctor, usually your general practitioner. They examine you and listen to you describe your symptoms, and then prescribe what they think is the best course of treatment for your ailment.

But scleroderma and other autoimmune diseases make your own body fight against itself. Therefore, when you have symptoms that are bothering you, more than one problem tends to be going on. In most cases, more than one body part is also affected. So going to a general doctor for treatment isn’t going to cut it.

It’s best to have a specialist for each part of your body that has active symptoms. Typically, that means trips to visit several different specialists. I learned quickly, especially since I have around a dozen doctors, that these specialists need at the very least to communicate with one another through email about my treatment as a whole. They needed to be on the same page and informed about one another’s medical advice. Otherwise, what’s the point of treating me if everything isn’t cohesive and communicated to all my doctors?

I also realized that having the best doctors in the country didn’t mean squat if they weren’t willing to communicate with one another to treat my disease entirely and collectively. The first five years of my scleroderma care were lacking that “whole body, total disease” concept, making my treatment process unorganized and incomplete.

Eventually, I’d endured enough. I had a serious “family meeting” with my support system, and we concluded that the care I was receiving was not cutting it. My symptoms were getting worse, and I needed a change in a big way. It took me some time to find a hospital with doctors that not only accepted my insurance, but also practiced the concept of cohesive care. Eventually, I did, and my medical care has been on point ever since.

Speaking out about comprehensive care

Five years ago, the Steffens Scleroderma Foundation and Russell Sage College approached me to be a keynote speaker and participate as a patient adviser on a medical panel. I jumped at the chance to share my experiences from a patient’s perspective when it came to collaborative, cohesive care. The event was a tremendous success and opened many eyes to exploring collaborative ways to treat scleroderma.

I was shocked to see how many academic professionals attended my speeches — and moreover, how eager they were to hear my story and perspective. I was met with an overwhelming amount of respect from medical professionals and students, so much that I was asked back repeatedly.

comprehensive care | Scleroderma News | Amy stands behind a lectern that has a college seal on the front. To her side is a green flat with the words "The Sage Colleges" in large type, with a United States flag beside it.

Amy addresses the crowd as a keynote speaker at Russell Sage College in Albany, New York. (Courtesy of Amy Gietzen)

I hope that other medical colleges will explore the world of collaborative care for scleroderma patients. It’s changed my life as a patient and made my medical care much more functional.

Today, I feel like I’m receiving proper medical treatment, and I couldn’t be happier and healthier. If you feel like your medical care is subpar or that something is missing in your treatment, speak up! It’s your body and your life that are on the line. You deserve to be heard and taken seriously, even if that might mean finding a different place for treatment.

You oversee your body. Don’t let anyone make you feel like you’re overreacting. It’s our right as patients to receive the best care. Do not be afraid to fight for it.

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.


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