“Please don’t google this until we have more information.”
That’s not something I often say to my patients. I usually write out diagnoses and treatments, specifically so patients CAN google and research them. The internet is a wild place but I still stand on the side of more information is better than less. Yet, when it comes to scleroderma, I take a different approach. I want to make sure my patients have 1) the right diagnosis and 2) an appropriate perspective on their diagnosis before engaging with, what can be, the scary world of scleroderma online. Because I also know that a scleroderma diagnosis doesn’t have to be that scary.
Scleroderma is a chronic disease without a cure. BUT every patient is different. Each patient has a unique set of symptoms with no one being the same.
Each scleroderma patient is unique
Scleroderma (aka Systemic Sclerosis) is an autoimmune condition that is characterized by poorly controlled fibrosis. This is in contrast to rheumatoid arthritis (RA) and lupus (SLE), which are driven by inflammation. The fibrosis (which simply means scarring and thickening of tissues) is most commonly seen in the skin; usually in the hands and forearms. Fibrosis can also develop in organs, most notably the lungs, the GI system (esophagus, stomach and intestines), the kidneys and the heart. There are multiple types of scleroderma, each with a unique collection of symptoms and antibodies. CREST syndrome (which stands for Calcinosis, Raynaud’s, Esophageal dysfunction, Sclerodactyly, and Telangietasias) is also known as “limited” scleroderma. The term “limited” indicates the extent of the skin involvement, as these patients tend to have skin fibrosis limited to the hands and forearms. “Diffuse” scleroderma refers to patients with skin involvement beyond the hands. “Localized” scleroderma, another type, manifests as discreet areas of skin fibrosis that occur throughout the body. You can see how a general internet search could give you information that doesn’t relate to you or your diagnosis!
How do you treat Scleroderma?
Because it is not a condition driven by inflammation, our usual anti-inflammatory, rheumatologic medications don’t treat scleroderma effectively. We suspect that the inflammation occurred months to years before the fibrosis appears. By the time a patient is typically diagnosed, the inflammation has largely burned out. Thankfully, treatments focused on stopping fibrosis, or anti-fibrotics, have been developed and are showing promise, especially in those with lung disease. However, just because our treatments are limited, doesn’t mean we are helpless. We have several tools at our disposal to help with many of the symptoms of scleroderma.
An experienced rheumatologist is key when dealing with scleroderma. Scleroderma is a rare condition, even amongst rheumatology clinics. It is important that patients advocate for themselves when facing rare conditions, such as scleroderma. “How many cases of this have you seen?” “Who do you call when you have a question or a difficult case?” These are questions that may seem invasive but are in your right to ask. It is up to you to find the right doctor and these questions will show a doctor’s experience and transparency.
To learn about scleroderma, check out this week’s video and make sure to share with others!
In good health,
Want to work with Connected Rheumatology?
Accepting new patients in Texas & California!