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First Awareness Day Gives Hope to IgG4-RD Patients

In a historic move toward hope and healing, an international group of clinicians has declared April 4 as IgG4-RD Awareness Day at the Fifth International Symposium on IgG4-Related Disease in Milan.

IgG4-RD is a rare autoimmune disorder that causes an abnormal buildup of immune cells in several different organs throughout the body. Patients struggle with a range of symptoms, which can include tumor-like growths and inflamed and damaged organs. They are often misdiagnosed or have their diagnosis delayed due to a lack of IgG4-RD awareness among health care providers.

“The Threshold of a New Era”

John H. Stone, MD, who announced the awareness day at the International Symposium on IgG4 Related Disease, lauded “the threshold of a new era.” The first patient advocacy group, the IgG4ward! Foundation, was announced in the same remarks.

“Pending the results of international clinical trials,” Dr. Stone said, “we may soon have approved therapies to treat this disease.” But even approved drugs may not be available to patients under their particular health plans, or because providers are unaware of new treatments. More advocacy and awareness are needed, Dr. Stone said, to ensure that all IgG4-RD patients benefit from scientific discoveries and treatment advances.

Facing Misdiagnosis, Symptoms & Mental Strain

IgG4-RD symptoms can present in a number of ways and often mimic symptoms of more common disorders. That means that patients sometimes undergo highly invasive treatments, including chemotherapy and surgery, for conditions they actually do not have.

Out-of-pocket expenses can be high, and often patients must travel to see specialists or access diagnostic tools during their search for answers. IgG4-RD patient Alex says, “It’s so hard to find doctors who know about this disease and are willing to treat us.”

Meanwhile, IgG4-RD symptoms may continue to worsen. Serious symptoms, including organ failure, may advance unchecked alongside other serious side effects. “Not getting the right treatment,” Alex says, “has its own complications that are added to the disease.”

While an IgG4-RD diagnosis puts a name to patients’ struggles, it may also strain patients mentally and emotionally. The IgG4-RD community lacks the formal services and communities that exist for many patients with other chronic conditions. Meanwhile, friends and family are unlikely to understand the condition, which contributes to isolation and stigma among patients. IgG4ward! is working to combat this with the recent creation of the IgG4ward! Online Community – a space for all impacted by IgG4-RD to meet, share, discuss and learn together.

Another IgG4-RD patient, Lauri, notes that continuity of care is also crucial. “Having to change providers due to insurance or retirement can be traumatic,” Lauri says, adding, “Too many providers want to start over with diagnosing and extensive repeat tests rather than supporting the patient’s actual need for continued treatment.”

On this newly established awareness day, it’s important to acknowledge that patients need support, access to treatment and greater education for clinicians. It’s time IgG4-RD patients receive the understanding and commitment to treatment innovation they deserve.