A woman from Shropshire shared her experience of a year-long wait for a diagnosis of Sjogren’s syndrome, a rare autoimmune condition. Her story highlights the difficulties in diagnosing the disease due to its overlapping symptoms and the critical need for increased awareness among healthcare professionals.

The Beginning of a Long Journey

Sheeraz Henderson’s journey began during a holiday to France. She initially noticed swelling in her feet after travelling on the Eurostar, attributing it to a lack of activity. However, the swelling persisted, prompting her to change to more comfortable shoes.

Initial Symptoms and Testing

Upon returning to Shropshire, a visit to her doctor revealed elevated inflammatory markers in blood tests. Despite this, a definitive diagnosis wasn’t immediately made. This led to a year-long wait for an appointment with a rheumatologist.

Worsening Condition

During the wait, Sheeraz experienced a worsening of her symptoms. Her skin became dry and sensitive, she noticed hair thinning, and her mouth became painfully dry with peeling skin. She also developed a hoarse voice.

Expanding Pain and Physiotherapy

Aches and pains spread to her legs and jaw, and she experienced debilitating hip pain. This led to referrals for physiotherapy.

Diagnosis and Treatment

In October 2023, Sheeraz finally received a diagnosis of Sjogren’s syndrome. This rare autoimmune disease causes the immune system to attack the body’s moisture-producing glands.

Understanding Sjogren's Syndrome

Professor Ben Fisher of the University of Birmingham explained that Sjogren’s commonly presents with dryness of the eyes and mouth, but can also affect the skin and vagina. He noted that 30 to 40 percent of patients experience inflammation in joints, lungs, or nerves, leading to pain, stiffness, breathing difficulties, or numbness.

Disproportionate Impact on Women

The condition disproportionately affects women, occurring nine to ten times more frequently in females than males. This is potentially linked to genetic factors on the X chromosome and the influence of sex hormones on immune function.

Diagnostic Challenges

Diagnosing Sjogren’s syndrome is often difficult due to overlapping symptoms with other conditions and a historical lack of research. Professor Fisher emphasized that diagnosis often involves piecing together subtle and vague symptoms like gradual dryness and fatigue.

Finding Relief and Managing the Condition

Sheeraz found relief with hydroxychloroquine, an anti-rheumatic drug, which quickly eased her symptoms. She now manages the incurable condition with medication and support from Sjogren’s UK.

The Importance of Early Detection

Diagnosis typically involves assessing symptoms, blood tests for specific antibodies, and potentially a biopsy of the salivary glands. Delayed diagnosis, often due to a lack of awareness and competing demands in primary care, can lead to long-term complications like gland damage and increased risk of dental problems. Raising awareness and improving early detection are crucial for managing this often-overlooked autoimmune disease.