100 patients with Sjogren’s syndrome give their advice about how to better handle their disease

Sjogren’s syndrome is a disease with a diverse range of symptoms such as dry mouth, dry eye, lethargy, and joint pain which greatly impact quality of life. However, patients’ experience of their disease symptoms and how they manage their diseases is not well known. QLife conducted a survey in a Japanese Hospital with 100 patients at a Rheumatology Clinic to discover their “real opinion” about their disease. In addition, Clinic Director, Professor Akira Sagawa gave his insight about the questionnaire results.

Sagawa Akira Rheumatic Clinic Director
1969:Graduated from Hokkaido University School of Medicine
1993:Manager of Yamanoue Hospital Center for Rheumatism and Collagen Disease
1995:Director of Hospital
2006:Opened Sagawa Akira Rheumatic Clinic in Sapporo City Chuo Ward
http://www.sagawa-akira-clinic.com

1. 1. Patients report dry eye (99%) and dry mouth (98%). Over 80% report the disease “influences daily life”
2. 2. After symptoms first appear, diagnosis as Sjogren’s syndrome takes on average three years , but the longest was 44 years
3. 3. Diagnosis of Sjogren’s syndrome, 40% of patients to confront with the disease
4. 4. Advice from patients: Do not strain yourself, avoid stress
5. 5. To alleviate the pain of Sjogren’s syndrome
6. 6. Contact us

When patients were asked about their current symptoms and their impact on daily life, almost all complained of “dry eye” (99%) and “dry mouth” (98%) symptoms, as well as “feeling fatigued” (84%), and “joint pain” (82%). Regarding the degree of influence of each symptom, 84.7% of patients experiencing dry mouth and 83.8% of patients experiencing dry eye answered that their symptoms were “very influential on their quality of life” or “slightly affected their quality of life”.Furthermore, dry eye (33%) and dry mouth (29%) were the symptoms that many patients want treated.

In the survey, patients were asked to describe their episodes of dry mouth and dry eye symptoms. Here is what they had to say:

Dry Mouth

• I cannot eat rice crackers and cookies without water.
• My tongue was rough and tingling, so it was difficult to eat.
• Because it tends to cause tooth decay and periodontal disease, I have increased how much I brush my teeth.
• When my thirst is terrible, the inside of my cheek sticks to my teeth.
• Dry mouth causes trouble talking which influences socializing.
• Keeping myself hydrated brings me to the toilet a lot.
• When asleep, my tongue stuck to my upper mouth and I could not breathe.

Dry eye

• My eyes always hurt and the sun is always bright, so I do not like to go out on sunny days.
• I was using contact lenses, but since my eyes are bad, contact lenses stick to my eyes and are hard to remove, so I stopped using them.
• My eyes always hurt and I constantly have bloodshot eyes. So now I often narrow my eyes.
• I need to carry eye drops because eyes are always dry. When I do not carry them, I need to yawn to release tears.

The survey showed that from the onset of symptoms, it takes three years on average (44 years as the longest) to be diagnosed with Sjogren’s syndrome. On average respondents reported 1.8 years from the symptoms’ first appearance until they sought their first medical consultation. The average period from the first medical consultation to the diagnosis of Sjogren’s syndrome was 1.2 years.

When asked if there was a change in their feelings about facing their disease after being diagnosed with Sjogren’s syndrome, 9% answered “I was much more positive” and 31% “I became somewhat positive”. Below are comments from the patients who became positive after their diagnosis.

• Once the cause was identified and the medicine worked, I did not need to lie down for long time even when I work or go out.
• I have been called a liar and treated as lazy, depressed, and a malingerer for many years, but I was relieved that I was right.
• Because the symptoms are relatively light and it is possible to deal with them on my own, I thought that I could work or endure it.
• I was anxious because the cause was uncertain, but from the day I knew the cause, I could face it.

• It is necessary for families to understand your disease, so tell them about it and ask for their help when something happens.
• It is important to meet a doctor who you can consult about anything regardless of the size of the hospital because you will need long-term treatment.
• The pain and difficult time you are having is hard to share to get understanding from other people. Relax and avoid stress by making yourself free.
• First of all, it is most important that your family understand that it is a disease. You will feel comfortable when your family communicate with you normally after gaining their understanding. If you can become a selfish character then you will be more comfortable.
• Become slightly sensitive to your body and when you feel tired, do not suffer from it, please take care of yourself. It is important not to strain yourself and to rely as much as you can on your family and friends.
• Think about steps with a bright mind without worrying or sadness. It is nobody’s fault, so do not think “Why me …” That way you will not become depressed. Always convey your gratitude to your family and medical personnel. It is the secrets to good relationships.

“Sjogren’s syndrome is often accompanied by painful symptoms such as dry eyes, dry mouth, feelings of fatigue, and joint pain, but by visiting medical institutions it is possible to relieve your symptoms and improve your quality of life. Also, in order to live well with this disease, it is important to talk to your family and the people surrounding you (not only to a doctor). Please do not try to solve this problem alone, please talk with your doctor, family, and other patients.”（Dr. Sagawa）

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