A UNIQUE WAY TO REVEAL AN INTIMATE SIDE
OF HAVING A RARE CHRONIC DISEASE
Photographer Emily Blincoe has some 423K followers on Instagram, and according to The Wall Street Journal, she is a “hobby photographer” who was able to build a following through her mastery of stylized images of everyday objects stacked, laid and arranged in a neat, visually pleasing way.
Though the individual components depicted are familiar, the new arrangement requires the viewer to look for more than just literal meaning in the image.
In a new national photography campaign, Emily captures the daily lives of three unique women (including her own mother!) with a single factor in common – a disease called primary biliary cholangitis. PBC is a progressive autoimmune disease that affects the bile ducts in the liver, and is more common in women than men. If left untreated, PBC can progress to hepatic fibrosis (liver scarring), cirrhosis, liver failure, and in severe cases may result in death unless a patient receives a liver transplant.[1] [2]
The new photography campaign called LiveHer is aimed at bringing awareness to this little-known disease that affects mostly women, often in the prime of their lives. The campaign hopes to empower and inspire patients to take control of their PBC by showcasing the realities of these women’s lives. The powerful campaign images illustrate their indomitable spirit and strength as they work every day to overcome the challenges of PBC, take control of their health and truly thrive.
Join me in a recent interview with 36-year old PBC patient Brandi Bartel as she shares her story and also Dr. Jennifer Pate, Chief of Psychiatry at Baylor St. Luke’s Medical Center. Dr. Pate happens to have PBC herself, and from her unique point of view, will discuss how she helps patients who have liver disease manage the deep emotional impacts of it. Both guests will also discuss the new LiveHer photography campaign, and how your audience can view the pictures on Facebook. They’ll offer reminders about the importance of routine liver blood tests which can help facilitate an early PBC diagnosis for at-risk patients.
Check out the entire interview here: https://www.youtube.com/embed/oqTrPXX8kA4?rel=0
For more information, go to https://www.facebook.com/LiveHerPBC/ or livingwithpbc.com.
Bio: Brandi Bartel
- Brandi Bartel is a 36-year-old woman with PBC from Springfield-area, Missouri.
- She is the director of a non-profit for violent and sexual crime victims, and very passionate about helping victims.
- She was diagnosed with PBC in her early 30s after experiencing excessive stress and fatigue. She had originally associated her low-energy with her stressful job; she was not expecting to be diagnosed with this rare and serious liver disease that disproportionately impacts women, often in the prime of their lives. Of note, Brandi has a family history (grandmother) of PBC.
- Upon being diagnosed, Brandi was initially concerned about what her life with PBC would look like, and the potential stigma associated with liver disease, but has largely gotten past these concerns. She now aims to educate and empower others to get their liver health tested routinely, especially women who are much more likely to get PBC.
- Brandi is married to her husband Jonnathan. She enjoys many outdoor activities such as hiking and camping, and loves to cook.
- Full story / local coverage of her PBC experience:
Bio: Dr. Jennifer Pate
- Dr. Pate is Chief of Psychiatry at Baylor St. Luke’s Medical Center; specializes in caring for the mental health needs of patients with chronic illness.
- This is important as there are often sensitivities and stigmas associated with having a liver disease, as people often don’t realize that not all liver diseases are related to alcohol consumption, which PBC is not.
- PBC also affects (mostly) women in the prime of their lives, between 35-60, often without physical symptoms until the disease has advanced. Also, information available online about PBC is often bleak and uninspiring, all making a diagnosis particularly difficult – so emotional support and feeling understood is key (hence the goal of the LiveHer campaign).
- Of important note, in addition to treating PBC patients, Dr. Pate also has PBC herself.
- Dr. Pate also has a disorder called Common Variable Immune Deficiency, the body’s inability to produce antibodies to fight infection. To treat this disorder, she has received life saving infusions every three weeks for the past 30 years. Without accurate diagnosis and treatment, she would not have survived. Having this disease inspired her to become a doctor herself, counseling others with chronic disease.
- Dr. Pate is 50 years old and has been practicing for 17 years.
- Local coverage of Dr. Pate:
[1] Al-Harthy N, Kumagi N. Natural history and management of primary biliary cirrhosis. Hepat Med. 2012;4:61-71.
[1] Scheuer PJ. Ludwig Symposium on biliary disorders—part II. Pathologic features and evolution of primary biliary cirrhosis and primary sclerosing cholangitis. Mayo Clin Proc. 1998;73(2):179-183.
*Photo and Interview courtesy: Intercept Pharmaceutica