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How does Sjögren’s disease affect people’s quality of life?

Written by Geoff Case, RARE Revolution Magazine

Sjögren’s disease affects people in a variety of ways, explains Janet Church, president and CEO of the Sjögren’s Foundation. The burden on individuals may be considerable, potentially impacting people’s diet, sex lives, relationships and finances.

People with Sjögren’s often need to adapt their diet because of the dryness of their mouths. Janet explains that moist foods, such as vegetables or dishes with sauce, are much easier to eat than dry foods. Additionally, too much spice (chilli) or acid can aggravate the mouth and cause significant discomfort and pain, so these foods are also avoided. These alterations can make the joy of food and dining with friends a challenge. She adds that many people with Sjögren’s also find they need to avoid excess consumption of sugar.

Having a dry mouth can also make it unpleasant to drink alcohol. In Janet’s experience, drinking can feel “like you have a lot of tiny cuts in your mouth and you’ve squeezed a lemon on them”.

Unfortunately, Sjögren’s may also affect people’s intimate relationships. Vaginal dryness can result in significant pain for women, or even injury, during sexual intercourse, and it is possible that small fibre neuropathy may inhibit orgasm.

The whole topic of sex and Sjögren’s is under-recognised, Janet says, with few people discussing it openly, and a lack of research. Janet worries that women might not realise that the root cause of their discomfort or pain may be their disease and may not discuss the issue openly with their doctor and partner. This silence can prevent their getting medications and help before any damage is caused and can certainly impact intimacy.

Friends and family may not always understand the ramifications of Sjögren’s disease for the affected person. People with Sjögren’s may become anxious about simple things that others would never think about, such as the availability of water (because of their dry mouth), or the presence of air conditioning or a breeze (because of their dry eyes).

In particular, family and friends may not understand the impact of symptom flares. “People don’t necessarily understand that if you’re in a flare and exhausted you can’t ‘push through’,” Janet says. “If I push through a flare, I’m not down for just two days, I’ll be down for a week and I can’t do that for them.”

“People have lost friends. People have had to alter how they relate to their children and spouse. There’s lots of accommodation needed—it’s about evolving relationships that are supportive for all while recognising new boundaries.”

A lack of understanding from others can isolate people, potentially increasing their risk of experiencing anxiety and depression. As Janet puts it, “things can snowball to create a big emotional burden”.

Janet says that the out-of-pocket expenses for people with Sjögren’s may be much higher than for people with other rheumatic diseases. People may need specialised products to help them maintain comfort that are not covered by insurance plans, such as moisturising eyedrops, serum tears, mouth gels, vaginal suppositories, creams to treat rashes or dryness, and possibly humidifiers to increase comfort around the home and office. With the disease having such varied symptoms, people may also need to visit a “multitude of doctors”, increasing out-of-pocket costs further. For those people who need several doctors to help manage their disease, it can become “a second job” to keep up with appointments and labs and picking up medications and products.

“Most people who have a disease are looking at the cost of their prescription medicine, but we have a lot more things to buy.”

There are clearly many challenges that come with Sjögren’s disease, but Janet believes there is hope for the future, with research into the disease now at an “inflection point”.

For now, she emphasises the importance of rapid diagnosis so that people can get the support they need. The Sjögren’s Foundation website features a wide range of informative resources, including a “survival tips” page, a members-only area, and the results of its recent patient survey, which gives further insight into the physical, mental, emotional and financial burden of the disease.1 Additionally, there is an area on the website for healthcare providers and researchers to learn more about the disease and access resources such as clinical practice guidelines.

There are also clinical trials in process that we hope will provide a therapy for Sjögren’s patients; when that occurs, we hope that much of the burden of this disease will be lifted.”

Further reading

Living with Sjögren’s patient survey:

The documents contained in this website are presented for information purposes only. The material is in no way intended to replace professional medical care by a qualified specialist and should not be used as a basis for diagnosis or treatment.

This digital spotlight has been made possible with financial support from Horizon Therapeutics, who recommended the potential contributors. With the exception of a factual accuracy check, Horizon Therapeutics had no editorial control over the content of this article. All opinions are those of the contributor.

RARE Revolution Magazine and Horizon Therapeutics are not responsible for the content of any external sites linked to within this article. RARE Revolution Magazine retains all copyright.

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