How to Create a Comprehensive Care Team to Manage Scleroderma
Why it helps to have all your specialists communicating with one another
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.
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.
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.
About the Author
Comments
Carol
I was very lucky that my GP referred me to Northwestern Hospital in Chicago immediately upon discovering my high ANA results. My rheumatologist deals only with scleroderma patients and my pulmonologist works very closely with her, as much of his practice deals with patients with auto-immunes issues. This team approach was already in place, for which I am thankful. My symptoms were caught early and treatment started at the appropriate time. I no longer run but still walk 2-3 miles 5 days a week and swim a mile twice a week. Fingers crossed it can continue. Thanks for your perspective.
Amy Gietzen
Always like to here the progress and experiences of others battling with this disease. Thank you for sharing your journey with me.
Paula Lindsey
Hi Amy, It's Paula from Global Genes. I'm going back through your articles and this one really "hit home". I would very much like to have some time with you (maybe 30 minutes) when we are in Atlanta at the summit in November 2022, to sit down (privately) so I can go over what the last year and 10 months of my life have been like in regards to first testing positive (ScL 70) and being diagnosed with many symptoms associated with Scleroderma. I am still at odds with the care I have been given by Rheumatologists. I left one I had been with for 4 years when she seemed very reluctant to discuss the results of FOUR positive SCL 70 tests... that SHE was ordering. I was told "you worry too much" .... or "I just can't believe the results and think they might just be false positives". She would become hostile when I would try to push for answers or any kind of treatment plan. I have a 30 year history with many overlapping autoimmune diseases, was treated for 9 years for active LUPUS (been in remission since 2018). I have lost my thyroid gland by way of oral irradiation to hashimotos thyroid disease, positive chrohns tests and GI problems, Treated with biologics for RA until August 2022 when I could no longer afford the drug. So, it's obvious based on my medical history that I have experience with auto-immune disease and how it can destroy your body. I find it hard to just brush the positive Scleroderma tests under the rug. Not to mention that I have esphogael (sp ?) dysmotility, documented Reynauds , tachycardia (for which I have been on medication over a year now). I am also a breast cancer survivor of 9 years. It was caught early so I did not have to undergo chemo even though mastectomy was necessary. I do NOT like the "watch , wait and see " attitude I have been given by my former rheumatologist and the new one (whom I have seen 2 times now). I am very frustrated ..... and emotional. The nurse practictioner at my GP's office is my best advocate for Scleroderma. She is NOT ready to push it under the rug ... it helps that she has actually had a Scleroderma patient and is VERY familiar with the disease. Thank GOD for her otherwise I would be very discouraged. I would like to talk to you in person to discuss my "new" rheumatologist's approach to all of this. I left one and I'm not sure if the new one is much better. He was the only choice I had with my HMO and Obama Care). I just need some advice on how to navigate through all of this. Your article helped me realize that I may have to keep "searching". But how do I do this without questioning myself because specialists have made me feel inferior and not validated in my concerns with Scleroderma and how is 'might" effect my body. Thanks Amy. I can't wait to meet you in person. If you are not up to any discussions during the summit, I will totally understand and respect that.