Cutting-Edge Breakthroughs in Treatment, Plus Awareness Campaigns, to Help Female Autoimmune Sufferers  

A major women’s health concern today is the struggle with chronic disease, particularly autoimmune diseases. In the United States, approximately 16% of the population fights a losing battle against 100+ different kinds of autoimmune disease. To put that into perspective, the population living with autoimmune diseases is bigger than cancer and heart disease combined! Furthermore, of that 16%, ; in women less than 64 years old, autoimmunity is a top-10 leading cause of death. The upshot? An epidemic number of young women and children today face a lifetime of suffering.

Unfortunately, the invisible nature of autoimmune diseases enables and perpetuates the need to put a pretty filter on a woman’s presented image. Life with an autoimmune disease becomes a masquerade. Sufferers do not look as sick as they feel, and the appearance of picture-perfect health can deceive doctors into dismissing patients. Unfortunately, because of this masquerade, public health statistics fail to accurately capture the autoimmune epidemic. Therefore, much has to change to alter the status quo on this serious problem.

Breakthroughs Making Life Better for Autoimmune Sufferers

While these changes cannot happen overnight, defying the “disease-care” paradigm (wait until it’s broke — and then fix it) and choosing to adopt a “prevention” lifestyle/wellbeing approach may be a good place to start. In many ways, autoimmune disease is largely a woman’s disease; it is especially heart-wrenching to see mothers with autoimmune diseases raising children with autoimmune diseases. The positive flip side? Women are in a unique position of power to influence change, set examples and guide the next generation into taking control of their health as well as that of their children and grandchildren, through personalized prevention and active disease management.

Now more than ever, a convergence of scientific discoveries with technological advances is giving hope to autoimmune patients and making active prevention possible. On the science side, multi-disciplinary teams working in genomics, immunology, and other specialties are developing a true systems biology. Through microbiome research, a whole new ecosystem was discovered that may hold a key to solving some of the mysteries behind immunological health and disease.

In addition, better ways to collect, store, and analyze data are all strengthening these scientific advances. With improved analytics, such as predictive modeling, artificial intelligence, machine learning, and other techniques, such data is beginning to be transformed into personalized, actionable information.

So, the stage is set for personalized prevention! Already, many women are taking charge of their health. By tracking diet and lifestyle changes, women are changing their futures and the future of their children. Through a united front, active personalized prevention could turn the losing fight against autoimmunity into victory. 

Solutions – Both Digital & Psychological — at the Forefront

Our latest contribution to this effort consisted of bringing together three carefully chosen panelists, with Bonnie Feldman as moderator, to speak at SXSW. Since SXSW is traditionally attended by a younger audience, it stands to reason that increasing awareness about autoimmune disease is essential, not only for the participants coping with it, but for the larger group who may be unaware of how close they are to people struggling with these disorders. Panelists were therefore chosen who could provide evidence-based information on how lifestyle changes can influence health, show how prevention is possible — and especially, show that early prevention is better.

Linda Avey, Poonacha Machaiah, and Nicole Guthrie, discussed how, by harmonizing data, science, and technology, personalized prevention is in your back pocket. For example, Linda Avey of We are Curious Inc, discussed its platform for tracking personal data and turning it into useful insights. The body is the most useful source of data for personalizing health care and prevention, but currently, most such data is siloed by individual, practice or specialty.  However, if shared (through the help of wearables, personal tracking and the cloud), personalized prevention could shift from dream to reality.

Similarly, steps towards everyday personalized prevention are right under our noses. Poonacha Machaiah of JIYO, illustrated how awareness is key to transforming and reinventing the body. Changes in emotions, social interactions, and environment may influence gene expression (through epigenetics), while improving physical, emotional, and spiritual well-being can influence the structure and function of some brain regions (neuroplasticity).

Prevention can also start with positive changes in habits: healthy sleep, stress and emotion management, exercise/movement, and nutrition. Maintaining these behavior changes increases personal resilience and resistance to disease. Nicole Guthrie of HopeLab states that resilience stems from purpose, connection, and control. By identifying the behavior change, understanding the psychology, and then applying the right technological tools, active personalized prevention becomes possible.

So, take control, embrace a spirit of experimentation, and find the balance between individual effort and internal and external feedback loops to create and maintain new, healthier habits.

Written by Tiffany Simms, Bonnie Feldman, and Ellen M Martin