Written by: Bonnie Feldman, DDS, MBA, Anna Simon, Ellen M. Martin
Obtaining appropriate diagnosis, effective treatment, and quality care for autoimmune and chronic conditions is often quite challenging. If you have experienced such struggles, then you are not alone. Statistics show that over 50 million adults in the US suffer from autoimmune diseases… so why does it remain so difficult to find the right resources and management options for these conditions?
At Your Autoimmunity Connection, our goal is to shed light upon the current state of autoimmune diseases – from patient stories to updated statistics and emerging research – in order to ultimately move towards tackling this invisible epidemic.
This month, we shine our spotlight on scleroderma, or systemic sclerosis. Read on to become connected with available statistics, research initiatives, supportive patient communities, and other resources. And check out our Facebook page and forum for more autoimmune-related updates!
What is scleroderma?
Scleroderma is a rheumatic autoimmune disease targeting connective tissue. As the name suggests, the most common visible symptom is hardening and tightening of the skin. Consequently, the disease is progressive and varies greatly amongst patients. For some patients, scleroderma affects only the skin; however, in others, the disease affects blood vessels, internal organs, and the digestive tract. Besides hardening of the skin, other symptoms may include coldness and numbness in extremities (aka Raynaud’s disease), acid reflux, headache, fatigue, and constipation.
Unfortunately, like most autoimmune diseases, scleroderma can be difficult to diagnose due to its variability from patient to patient. Diagnosis may require visits to both rheumatologists and dermatologists, as well as blood tests and more specialized tests targeting affected organs. Although the underlying causes of scleroderma are not completely understood, the disease is characterized by damaged blood vessels and tissues, which lead to an overproduction of collagen and increased inflammation.
Currently, there is no cure for scleroderma, but medications can help tame and control the symptoms. For example, medications that dilate blood vessels target the lung and kidneys as well as Raynaud’s disease. Other useful medications include immune system suppressors, acid reflux reliefs, and painkillers.
What do the statistics show?
According to the Scleroderma Foundation, about 100,000 Americans and roughly 2.5 million people worldwide have scleroderma.
- Scleroderma is about 4 times more common in women than men.
- Onset is most often between the ages of 35-55, although the disease affects people of all ages.
- Race and genetics have also been shown to influence the risk of scleroderma.
Connecting you with resources
Whether you are living with scleroderma, have a loved one who is, or are generally interested, the good news is that a wide array of resources exist to educate the public and guide patients in their personal journeys toward restoring optimal wellbeing. As Your Autoimmunity Connection, we hope to connect you with some of these valuable resources, from comprehensive reviews to research publications, clinical trial openings, patient support groups, and more.
Brush up on the basics, or dive deeper
With both genetic and environmental influences contributing to onset, pinpointing precise causes of scleroderma can be challenging. The following resources will guide you through risk factors, possible causes, types of scleroderma, treatment options, lifestyle modifications, potential health complications, and more.
Risk factors:
- Women in childbearing years are at highest risk
- Although scleroderma does not typically run in families, there may be a genetic predisposition to getting the disease
- African Americans and Choctaw Native Americans are more likely scleroderma affecting internal organs
- Potential environmental factors are still being researched
Possible causes:
- The main cause is the overproduction and accumulation of collagen in body tissues
- In people who are genetically predisposed, environmental factors can trigger symptoms
- These include pesticides, epoxy resins, and solvents
Types:
- Localized: Changes are found on just the skin or muscles
- Morphea: characterized by waxy patches on the skin
- Linear scleroderma: characterized by a hardened streak or line of skin
- Systemic: The connective tissues in many parts of the body are affected
- Diffuse: more aggressive skin thickening rapidly occurs all over the body and internal organs are also greatly affected
- Limited: the skin areas affected are limited to the hands, arms, legs, and face but there is still a significant effect on internal organs as well
Treatments:
- There are a few ways to treat Raynaud’s symptoms such as calcium channel blockers.
- There are many medications to relieve joint stiffness/pain.
- Treatments like antacids can help with gastrointestinal reflux.
- Immunosuppressive drugs can reduce the immune response.
- Steroids affect hormones to reduce inflammation.
Become an expert on all things scleroderma:
- Scleroderma Foundation:
- Learn about what scleroderma is and the different types of the disease.
- Mayo Clinic:
- Delve more into the different types of symptoms associated with Scleroderma.
- The Scleroderma Education Project:
- This guide for new and potential patients acts as a sort of “user manual” for navigating the disease.
- Medicine Net:
- If you have or think you have scleroderma, you may want to understand what life with this disease will look like.
Strengthen your support system
There is strength in numbers! You are not alone! For instance, 100,000 live with the Systemic form of Scleroderma and altogether there are approximately 300,000 patients diagnosed with all forms of Scleroderma in the US. Beyond connecting patients to resources, we believe it is incredibly important to connect patients with one another. Whether you have already developed a wide circle of support, are in need of a community, or are looking for an opportunity to voice your experiences or offer advice to others, the following groups may provide you with solidarity and support:
- Scleroderma Foundation:
- Look for support groups in your state.
- Inspire:
- This is an online forum that lets you narrow results by topic.
- Daily Strength:
- Ask questions, share your story, or read about other patients’ experiences.
- Scleroderma Support Group on Facebook :
- This is one of the largest Scleroderma support group on Facebook, with over 2,500 members. It is also the only group that focuses on functional medicine as a treatment for Scleroderma.
Hope for a cure: scleroderma research
We’ve picked out a few of our favorite research resources – so you can follow recent findings, become informed of future directions, and tap into your potential for involvement as a patient:
- Scleroderma Research Foundation: Funded research
- Look at the different research projects this organization is currently funding.
- Scleroderma News: Current research
- Explore some of the newly-minted studies and read about different therapy options.
- Scleroderma Foundation: Funded research
- Read how this organization allocates their roughly $1 million/year to Scleroderma research projects.
- Johns Hopkins: Clinical trials
- Peruse this leading medical school’s current clinical trials.
What is one thing everyone should know about scleroderma?
When looking at the big picture, we must remember that scleroderma falls within a larger category of autoimmune diseases, of which there are over 100 individually named diseases. Generally, one reason why the autoimmune epidemic has been largely “invisible” is that the history of discovering and treating autoimmune diseases separates them by body part and overlooks the common aspect underlying all these diseases – immune system dysfunction. The American Autoimmune Related Diseases Association (AARDA) estimates that 50 million Americans suffer from one or more autoimmune diseases. What’s more, a research study estimated that approximately 25% of patients with autoimmune diseases have a tendency to develop additional autoimmune diseases [1].
In conclusion, we hope that shining the spotlight on scleroderma this month connects you with beneficial resources and information, but we would like to emphasize the need to take a holistic approach in tackling the autoimmune disease epidemic. By looking at all autoimmune diseases together, we can move away from the fragmented statistics that hide the magnitude of the problem and towards concerted action in reshaping research, diagnosis, and treatment.
Get acquainted with Your Autoimmunity Connection
- Check out our blog at www.drbonnie360.com for all things autoimmune – from updates in research to possible lifestyle modifications, patient stories, and more.
- Find us on Facebook here, or join our Facebook Forum to connect with patients across all autoimmune diseases.
- Read our patient guide on How to Achieve Your Optimal Wellbeing
- Read our Guide to Movement Therapy
- Check out our other spotlights here
[1] Cojocaru, M, Inimioara Mihaela Cojocaru, and Isabela Silosi. “Multiple Autoimmune Syndrome.” Mædica 5.2 (2010): 132–134. Print.