Sjögren’s Syndrome: A Life of Pain and Resilience

New Zealander Shares Her Battle with Autoimmune Disorder

A New Zealand woman living with Sjögren’s syndrome, a debilitating autoimmune condition, has shared her challenging journey, highlighting the profound impact on daily life, finances, and overall well-being. Sandra Forsyth detailed her experience in a personal account, offering insight into the complexities of managing a chronic illness.

From Dubai to Diagnosis

In 2010, while working in Dubai, **Sandra Forsyth** fell ill, eventually being diagnosed with myelodysplasia, a form of blood cancer. This prompted her return to New Zealand. Doctors suspected her extreme fatigue was linked to another cause, leading to a diagnosis of Sjögren’s syndrome, followed by another autoimmune condition. She notes that these conditions often occur together, describing them as “hunting in packs.”

The Pervasive Impact of Sjögren’s

Sjögren’s syndrome, the second most common autoimmune disease affecting women after rheumatoid arthritis, primarily targets the body’s lubricating systems, notably the eyes and mouth. This results in severe dry mouth, leading to significant dental problems and costly treatments. Sandra Forsyth explained the painful and expensive reality of trying to preserve her teeth, as dentures are not a viable option for her.

Beyond the commonly known symptoms, Sjögren’s can cause widespread pain, fatigue, and affect other organs. Forsyth faced challenges in getting medical professionals to look beyond the mouth and eyes, but credits her supportive clinicians for her diagnosis of autoimmune hepatitis and painful bladder syndrome, both stemming from Sjögren’s attacking her liver and bladder.

Individuals with Sjögren’s can be at a higher risk of certain blood cancers. Management often involves medications to suppress the immune system, which can have adverse side effects. The careful balancing act of prescribing long-term medication is crucial, as Forsyth highlighted.

Lifestyle and Management Strategies

Forsyth manages her Sjögren’s symptoms primarily through diet, avoiding starchy foods, wheat, and inflammatory ingredients, especially simple sugars. She follows a Mediterranean diet rich in proteins like fish and lentils, and abundant vegetables. Due to mouth pain, she favors softer foods.

Her dedication to diet, exercise, and daily swimming has been instrumental in maintaining her health. She emphasizes the importance of being an active participant in one’s own care, keeping a notebook to track symptoms and discussions with her doctor. “Health literacy and being an active participant in your own care are key to good outcomes,” she stated.

The Financial and Emotional Toll

The diagnosis of Sjögren’s syndrome brought intense grief and a sense of loss, impacting Forsyth‘s identity, income, hopes, and dreams. Being unable to work meant relying on a benefit, a situation she described as a “horror story” due to living below the poverty line. She expressed concern for the growing number of young people with chronic conditions who face vulnerability, especially after their parents pass away.

The loss of human capital due to autoimmune conditions is significant. Many are forced into financial hardship; Forsyth has not worked for 15 years, since her fifties, and notes that many in similar situations are “desperately poor.”

Finding Support and Hope

With limited support available at the time of her diagnosis, Forsyth became a peer supporter and advocate, assisting numerous individuals, predominantly women. She emphasized the invaluable nature of peer support networks, calling them the “No 1 thing anyone with a chronic condition should access.” Arthritis NZ has been a significant source of support for her.

While the exact cause of autoimmune conditions remains unknown, genetics appear to play a role, with Forsyth‘s father having multiple sclerosis and several nieces and nephews affected by autoimmune diseases. Some theories suggest triggers like post-viral syndromes or trauma. The rise in long Covid cases also points to potential post-viral links.

There is currently no cure for Sjögren’s syndrome; management focuses on controlling symptoms and maintaining overall health. Despite the absence of remission, stem cell transplants have shown promise for some autoimmune diseases, offering a glimmer of hope for the future. Sandra Forsyth continues to lead a full life, cherishing her ability to support her community, even though it differs from her original aspirations. “It is hard at times, but I am proud and grateful to be able to support my peers and my community,” she concluded.