Patient Expert (Sweden)
After becoming a RN in 1969, I worked in geriatric care for several years. Since I have an interest in research, my first paper was about pressure sores. I founded the Swedish EDS Association in 1992. My primary research focus since then has been the Ehlers-Danlos syndrome, as it is common in my husband’s family. I defended my doctoral dissertation named “Living with Ehlers-Danlos syndrome” in 2003 at Karolinska Institutet. It contained qualitative interviews and questionnaires. I performed another study in 2008 about subjective and oral health, food hypersensitivity and quality of life, anxiety and depression.