Scleroderma is a rare autoimmune disorder that can cause a wide range of symptoms, including hardening and tightening of the skin, joint pain, fatigue, and organ damage. For many years, patients with scleroderma had to rely on treatments that were only moderately effective. But thanks to recent medical advances in medical technology and research, the future of scleroderma treatment looks much brighter. Let’s take a closer look at how diagnosis and treatment have changed in the last two decades.
Diagnosis:
Scleroderma or systemic sclerosis, is a rare and complex autoimmune disease. Due to its diverse array of symptoms that often mimic other conditions it can be challenging to diagnose.As we discussed previously, in our ANA blog link here, a scleroderma antibody does not make a diagnosis of Scleroderma. And patients can have scleroderma, even in the absnce of any positive antibody. The vast majority of patients with scleroderma, will have developped Raynaud;s phenomenon (changes of color of the skin of fingers that appear in the cold_see picture) months to years prior developing the telltale signs of scleroderma, such as skin thickening and tightening. The diagnosis of scleroderma is easier to make in patients with sclerodactyly related antibodies (Scl70, RNA-PolymeraseIII or centromere antibodies to name the most common). And while these antibodies help us make a diagnosis of scleroderma, having the antibodies alone DO NOT make a diagnosis of scleroderma. This is truly where the art of being a rheumatologist comes in. Come and talk with us for more information about this diagnosis, even if it is just to reassure you.
Once the diagnosis of scleroderma is confirmed, we will work on getting a baseline assessment of internal organs that can be affected by this condition. This is particularly important as scleroderma can affect the lungs, heart and kidney and we can prevent or treat such complications. As such, early diagnosis is crucial to managing the disease and limiting its progression, lending hope to individuals affected by this perplexing disorder.
Treatment:
Although there is no known cure, advances in medical research have yielded promising treatments that focus on managing symptoms, enhancing quality of life and preventing the progression of the disease. A multidisciplinary approach incorporating physicians from different specialties, physiotherapists, occupational therapists, and psychologists is often employed to address the diverse range of symptoms and challenges experienced by those living with scleroderma. From medications that target specific organ involvement and alleviate inflammation, to non-drug therapies such as skin care routines, stress management, and regular exercise, a personalized treatment plan can significantly improve the patient's daily functioning and overall well-being. With time, perseverance and the support of a dedicated healthcare team, many individuals diagnosed with scleroderma continue to lead fulfilling and productive lives, defying the limitations of the condition.
If you have been diagnosed with Scleroderma, I also highly recommend this web-based self management program created by researchers and clinicians specialized in scleroderma at the university of Michigan: https://www.selfmanagescleroderma.com/.
Conclusion:
There is hope for those who suffer from scleroderma. Thanks to improved diagnostic techniques and better treatments available today, patients can expect better outcomes than ever before.
Scleroderma is a rare diagnosis and patients should make sure to have a rheumatologist who is not only knowledgeable but also well connected in scleroderma network. The multidisciplinary approach is of utmost importance for patients with scleroderma.
If you are interested in learning more about our approach to patients with scleroderma and lung disease, I was recently on the faculty who created a course about this LINK HERE
And if you are looking for a rheumatologist in Colorado that truly cares and can help you navigate this diagnosis, please contact us at info@unabridgedMD.com.\