EN SV HOME STORIES LIVING WITH AN INVISIBLE DISEASE STILL’S DISEASE Living with an invisible disease Vanda shares story of her mental journey ‘Being able to be active is a gift’ Vanda lives a very active lifestyle. Working as a busy civil servant and happily married with two children, she is also living with adult-onset Still’s disease (AOSD), a rare, auto-inflammatory condition. Still’s disease affects the whole body and is an auto-inflammatory condition that can vary from individual to individual, even to whether it is chronic or acute. This variation makes diagnosis and managing treatment of Still’s very difficult. The disease continuum includes both systemic juvenile idiopathic arthritis (SJIA) with a childhood onset (any time between early childhood to late adolescence) and adult-onset Still’s disease (AOSD). Symptoms can include spiking high fevers, joint pain, rashes and fatigue. Because it relies on diagnosis by excluding other possible causes, the road to the right care and treatment can be long and painful. Vanda, 34, lives in the United Kingdom. At the age of 5, she experienced SJIA, which was misdiagnosed as rheumatoid juvenile arthritis, and which affected her childhood. She enjoyed a long period of good health, believing she was in remission, until she experienced a flare up at age 33 and was diagnosed with AOSD. Vanda has a very active lifestyle, working as a busy civil servant and happily married with two children. She has always loved team sports and the sense of achievement that being active gives her. However her diagnosis with AOSD triggered a re-evaluation of how active her life could be. As part of a mental journey, Vanda has accepted that certain things about her health would not be under her control. Instead, she chose to do everything she could to help get better physically, which helped with her mental healing too. In sharing her story, Vanda reflected that: “The most difficult part for me was to understand I may not ever get better. It took me a good three months to understand my life had fundamentally changed.” As part of the new journey she had embarked on, she said: “I also had to adjust my expectations and what I could reasonably achieve on any given day.” Misdiagnosis and lack of transition of care into adulthood In childhood, Vanda’s condition was active for about 9 years. Just before her fifth birthday she woke up one morning unable to get out of bed. “I remember making fun of dragging myself to the bathroom as I couldn't walk, despite also being quite terrified,” she says. Her parents took her to see several doctors who tried various treatments, none of which worked. After the age of 13, however, she went into a long period of remission: she was told she wouldn’t have to worry about her condition again, and could lead a healthy teenage and adult life. Getting diagnosed and forming support networks After she was diagnosed with AOSD, Vanda says she felt relieved, but then went through a period of grieving, “a true rollercoaster both physically and emotionally”. As part of this process she sought out others, through societies and patient organisations, who understood her situation and helped give some hope for the future. “I would encourage anyone newly diagnosed with Still’s disease to seek out support from Still’s disease social media groups, to connect with those of us online supporting each other.” Although her journey has been challenging, Vanda says that learning and sharing with others in the Still’s community empowers her to live better with her condition. Joining others to advocate for further change and treatments is another important activity to get involved with. Vanda has committed to becoming an advocate for further research to understand what causes Still’s disease and the treatment options available. She has identified a need for more training and information online so that patients and doctors can access information quickly, together with known physicians who can be consulted. From her experience, Vanda believes that ‘just speaking with others who understand can be healing’. At Sobi, we also see the importance of sharing understanding and experiences of Still’s disease. That is why we support further awareness through partnering with local and global networks. AIArthritis Still’s Awareness Campaign Vanda spoke to us as part of the AIArthritis Still’s Awareness campaign. The campaign is based on patient-reported experiences to help address misunderstandings associated with Still’s disease, and increase visibility of the disease as well as the need for timely diagnosis. You can find out more about how Vanda coped with the mental journey being diagnosed with and living with Still’s by watching her film as well as finding out the experiences of others living with Still’s and supporting information at AiArthritis. About us At a glance Rare diseases Therapeutic areas Haematology Immunology Specialty Care portfolio Investors Reports & presentations Share information Calendar Career Open positions Meet our employees Media Press releases Gallery Sobiplay Sitemap Cookie Policy Privacy Policy Terms of use Cookies Settings © Swedish Orphan Biovitrum AB (publ) Reg. no. 556038-9321 This website uses cookies By clicking “Accept All Cookies”, you agree to the storing of cookies on your device to enhance site navigation, analyze site usage, and assist in our marketing efforts. Accept All Cookies Cookies Settings