“After decades of my symptoms being dismissed by multiple doctors, I found power in educating myself and advocating for my own needs. We need to make quality, patient-centered care more readily available; patients should never feel alone in their fight for wellbeing.” – Anonymous patient participant in our Autoimmunity Voices survey.
Obtaining appropriate diagnosis, effective treatment, and quality care for autoimmune and chronic conditions is often quite challenging. If you have experienced similar 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?
As 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 – and ultimately move towards tackling this “invisible epidemic”.
This month, we shine our spotlight on lupus (systemic lupus erythematosus, or SLE). Read on to become connected with available statistics, research initiatives, supportive patient communities, and still more resources. And check out our Facebook page and forum for more autoimmune-related updates!
What is lupus?
Lupus is a systemic autoimmune disease, characterized by inflammation that may affect a wide range of body systems from joints to skin, kidneys, blood cells, brain, heart, lungs, and more. Symptoms often vary amongst patients, depending also upon which body systems are affected. Common symptoms may include some combination of fatigue, fever, joint stiffness or swelling, headaches, and more. Perhaps the most infamous sign of lupus is a butterfly-shaped facial rash that spreads across the nose and cheeks, but even this is not present in all cases. As with many autoimmune and chronic conditions, no two cases are exactly alike.
The symptoms of each individual patient may wax & wane in both severity and permanence. Consequently, diagnosis can be a complex process. No single test can definitively diagnose lupus. Rather, providers may utilize a combination of physical examination, laboratory and imaging tests, and analysis of symptoms and family medical history to reach diagnosis.
While there is no cure for lupus at present, available treatments may help control flares in symptoms. Although many pharmaceutical treatments are available, matching them to each individual patient can be challenging, and some may have serious side effects. An emerging understanding of alternative approaches and the importance of lifestyle modifications has highlighted diet, supplements, and exercise as important factors that may moderate or even reverse symptoms, prevent flares, and complement or reduce reliance on pharmaceuticals.
What do the statistics show?
According to the Lupus Foundation of America, an estimated 1.5 million Americans, and at least 5 million people worldwide, have some form of lupus. Approximately 16,000 new cases are estimated to be diagnosed per year.
We decided to take a closer look at the numbers surrounding lupus, gathered by the Lupus Foundation of America and CDC – here is what we found:
- Lupus most commonly develops in patients between the ages of 15 to 44.
- Women are affected far more than men, with an average of 8 women for every 1 man.
- On average, diagnosis takes nearly 6 years for lupus patients, reflecting the variable presentation of the disease and the difficult task of differentiating lupus from other autoimmune diseases that affect joints.
- Approximately 20% of people with lupus have a parent or sibling who already has, or may develop, lupus (but not all people with lupus have a family history of the disease).
Perhaps most startling, the Lupus Foundation of America reports that 73% of Americans between the ages of 18 to 34 have either not heard of lupus, or know little to nothing about it… Yet, this age group is predicted to be at greatest risk of developing the disease. Our team at Your Autoimmunity Connection is working to increase awareness , as well as connect patients with one another and with currently available resources.
Connecting you with resources
Whether you are affected by lupus, have a loved one who is affected, or are generally interested, the good news is that a wide array of resources exist to not only educate the public, but guide patients in their personal journey 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 lupus can be challenging. The following resources will guide you through risk factors, possible causes, types of lupus, treatment options, lifestyle modifications, potential health complications, and more. Become an expert on all things lupus:
- Mayo Clinic: Patient Care & Health Information – Lupus
- Identify common symptoms and traditional treatment options, as well as alternative medicine approaches, lifestyle modifications, and more.
- Healthline: What is Lupus?
- Differentiate between types of lupus, and familiarize yourself with possible causes, risk factors, and preventative measures.
- National Resource Center on Lupus: What is Lupus?
- Browse the basics, as well as a list of facts the National Resource Center on Lupus thinks we should all know.
- Lupus Research Alliance: Understanding Lupus
- Become aware of possible health complications, and be inspired by lupus patient stories.
Strengthen your support system
There is strength in numbers! 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:
- MyLupusTeam: Lupus Support Online
- Connect through this social network and online support group for people living with lupus.
- Lupus Corner: Local Support
- Browse a list of locations to find a support group near you, or opt for online options.
- Pain Doctor: 20 Best Lupus Support Groups
- Choose the options that may best fit your needs from this curated list of online and local support groups.
- Facebook Groups & Forums
- A quick search on Facebook will yield a number of lupus patient forums and support groups, providing an accessible way of connecting with other patients, voicing any questions you may have, or sharing your experiences with others.
- Lupus Patient Voices
- Support may come not only from connecting with other patients, but also from hearing their stories and understanding their perspectives. This summary report of a lupus patient-focused meeting encompasses the impact of disease symptoms, perspectives on treatment, and incorporation of patient input.
Hope for a cure: lupus research
While a cure for lupus has yet to be discovered (and lupus has been a particularly difficult target for pharmaceutical developers), many lupus-related research initiatives are well underway. Efforts aim to elucidate the root causes and mechanisms underlying lupus, as well as identify curative targets. We’ve picked a few of our favorite research resources to highlight – catch up on recent findings and future directions, see where the funding comes from, and tap into your potential for involvement as a patient:
- Lupus Foundation of America: Research
- See how the Lupus Foundation of America is influencing research, from funding studies on causes, progression, and management of lupus to engaging in efforts to streamline clinical trials.
- Lupus Research Alliance: Funded Research
- Browse their comprehensive portfolio for a list of current research grants, furthering their commitment to funding promising lupus research initiatives.
- National Institute of Arthritis, Musculoskeletal & Skin Diseases: Action Plan for Lupus Research
- Explore this NIH action plan for lupus research, ranging from inflammatory mechanisms and biomarker development to clinical trials and patient-centered research opportunities.
- Mayo Clinic: Clinical Trials
- View current clinical trials in lupus research, as well as eligibility for patient involvement.
What is one thing everyone should know about lupus?
When looking at the big picture, we must remember that lupus falls within a larger category of autoimmune diseases, of which there are over 100 individually named diseases. 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 of immune system dysfunction the underlies all autoimmune disease. 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 . According to the Lupus Foundation of America, 1 in 3 patients responding to a membership survey reported that they had another autoimmune disease in addition to lupus.
We hope that shining the spotlight on lupus 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
 Cojocaru, M, Inimioara Mihaela Cojocaru, and Isabela Silosi. “Multiple Autoimmune Syndrome.” Mædica 5.2 (2010): 132–134. Print.