world sjögren's day

july 23, 2022

World Sjögren's Day is on July 23rd. This year, our campaign will be about dry eyes, especially as July is also Dry Eyes Month. Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

 

 

webinar about dry eyes

going beyond hydration for dry eye in sjögren's; a complete perspective

To initiate World Sjögren's Day 2022 campaign, we organised a webinar about dry eyes! This webinar was held on Tuesday July 5th 2022 with Dr Ankur Barua, ophtalmologist, in association with the BSSA. You can watch this webinar on replay just below (this webinar will be subtitled in other languages later in the year).

This webinar will be organized with the help of unrestricted grants from Janssen, Norgine, Novartis and Servier.
Sjögren Europe strictly follows the EFPIA code.
Sjögren Europe and the content of the webinar are totally independent of these companies.

sjögren's and dry eye - 12 points regarding the topic

 

with Dr Ankur Barua, ophtalmologist
1. Dry eye is a multifactorial disease

There is often not just “one type” of dry eye; and not all those with Sjögren’s have the same level or form of dry eye

 

2. Dry eye in Sjögren’s is not fully understood

There is still a lot to learn about the mechanism of dry eye in Sjögren’s, but there are more and more effective treatments in dry eye disease with positive results

 

3. Dry eye is still underdiagnosed and undertreated

There are still people with Sjögren’s who remain undiagnosed. There are numerous reasons for this, but often because the threshold to refer to a specialist for dry eye may be higher than for other conditions

 

4. Symptoms of dry eye disease can vary widely

Dry eye symptoms are extremely variable and can also range in intensity. Some sufferers may have mild symptoms but have quite advanced changes on examination. The opposite may occur where the signs do not match the level of symptoms

 

5. The majority of dry eye patients are women and post-menopausal

This aligns with those who are diagnosed with Sjögren’s and demonstrates the importance of sex hormones in Sjögren’s and dry eye disease alike

 

6. Dry eye disease in Sjögren’s can lead to other issues if not adequately treated

If not effectively treated, issues such as corneal ulcers including bacterial infections can occur. Poor ocular surface condition can lead to other inflammatory risk factors including blepharitis leading to secondary corneal infections

 

7. There have been significant advances in dry eye treatment over the past few years

Dry eye treatment is not limited to lubricating drops. Dry eye is thought to be multifactorial with a significant inflammatory component. Therefore new treatments aim to address the inflammation. There are also newer lubricating drops which aim to replace specific parts of the tear film and also aim to have a more lasting effect

 

8. Specialist contact lenses are effective in advanced cases of dry eye disease in Sjögren’s

There are specialist contact lenses which keep the surface of the eye well hydrated throughout the time the lens is in place. These lenses have a rigid shape which hold fluid within them creating an interface between the lens and the surface of the eye. When fitted by a specialist, they can be very effective in certain severe cases

 

9. The environment plays a crucial role in dry eye disease

Environmental factors which can be modified may play a vital role in successfully controlling the effect of dry eye disease in Sjögren’s. While Sjögren’s has an autoimmune basis, there are many environmental factors which could influence the symptoms and effects of the dry eye component. (for example, air conditioning, central heating, humidity, pollution). These factors can affect the quality of life in this condition

 

10. Sjögren’s does not exclusively involve dry eye disease, so an assumption of solely dry eye disease should not be made

Other eye conditions are found in Sjögren’s, some rarer than others. This is why not all eye symptoms should be attributed to dry eye alone. There are other conditions that can occur, and may be found more commonly in Sjögren’s. It is often assumed that the only condition linked to this condition is dry eye

 

11. Other eye conditions, and other health conditions can influence the effect on dry eye in Sjögren’s

Other eye drops such as glaucoma drops can exacerbate dry eye, and any eye drops containing preservatives can also exacerbate dry eye disease. In addition to this, other health conditions such as diabetes and types of arthritis can be linked to dry eye disease. Furthermore, some medications (not just eye drops) can make dry eye worse. Dry eye is truly a multifactorial condition

 

12. Dry eye disease, with the aid of a specialist in the condition, can be effectively controlled in Sjögren’s

It is important to emphasise that dry eye in Sjögren’s has a wide range of states and each person needs a customised treatment plan, and can be very effectively managed with the right stepwise treatment

 

sjögren's and dry eye - patients' perspectives for world sjögren's day 2022

Here we share with you some patients' perspectives about Sjögren's and dry eye where they explain how it is a challenge for them and how it impacts their life.

Sjögren's is often characterized by dry eyes (xerophtalmia) and dry mouth (xerostomia). Dry eyes and dry mouth are disabling symptoms that have a strong impact on the quality of life. However, Sjögren's is so much more than dry eyes and dry mouth: it can affect the whole body.

Sjögren's is a rheumatic, autoimmune and systemic disease with diverse clinical expression, prognosis and a multidimensional complexity. Diagnosing, treating, following up and researching Sjögren’s remains a significant challenge which is equalled by the lack of acknowledgment and recognition that it is a devastating disease, affecting patients physically, mentally, emotionally, socially, and financially. Quality of life is dramatically impaired. It is difficult and frequently impossible for others to understand how patients feel, how they must lead their lives with a disease lacking effective and specific treatment that has them living daily with invisibility, unpredictability, and unimaginable suffering.

For World Sjögren's Day 2022 on July 23 and Dry Eye Month we decided to focus on a traditional manfestation of Sjögren's: dry eye. This frequent, significant and debilitating symptom remains too often underdiagnosed and undertreated. Like all other symptoms of Sjögren's, it deserves more and better attention and solutions. Many patients in Europe still miss some basic quality information about one of the most common manifestations of this disease and feel misunderstood about it. As a young organisation, we chose to start with the beginning before digging deeper in the complexity and heterogeneity of Sjögren's.