TY - JOUR T1 - Self-management support for young people living with fluctuating chronic diseases JF - Archives of Disease in Childhood JO - Arch Dis Child DO - 10.1136/archdischild-2021-323118 SP - archdischild-2021-323118 AU - Casper G Schoemaker AU - Stefan M van Geelen AU - Marlies Allewijn AU - Marlous Fernhout AU - Rens van Vliet AU - Nico Wulffraat Y1 - 2022/01/09 UR - http://adc.bmj.com/content/early/2022/01/09/archdischild-2021-323118.abstract N2 - Unpredictable fluctuations, episodic deteriorations and flares are common in many paediatric chronic diseases, for example, asthma, type 1 diabetes mellitus, juvenile idiopathic arthritis (JIA), epilepsy, systemic sclerosis, cystic fibrosis, inflammatory bowel disease and sickle cell disease.1–4 For many children and adolescents, their chronic disease is not a steady state of illness. On the contrary, a continuous ebb and flow of symptoms interferes with functional and social daily life.1–4These fluctuations constitute a difficult challenge to patients’ ability to self-manage their disease, fundamentally different from more predictable illness patterns. In this Viewpoint, we—three professionals and three young adult patients—argue that the existing self-management programmes for children and adolescents with chronic illness and their families do not sufficiently prepare them to respond to these mostly non-modifiable fluctuations. In our view, the existing focus of most self-management programmes on the acquisition of skills to control presumed continuous symptoms might even be counterproductive.Young people with chronic disease have a strong desire to be like others, to fit in and to be accepted by their peers.1 The fear of rejection and the stigma associated with their condition often prevents them from disclosing their illness. In ‘good’ periods, there seems to be no reason for disclosure. Periodically, however, they may experience temporal deteriorations of their disease. The worsening of symptoms and their incapacitating effects disrupt normality and their daily life, leaving them with less control over what activities they can engage in. During these ‘bad’ periods, even the most skilled adolescents may be defaulted back to parental care and support.4Being unable to anticipate these disease fluctuations and flares contributes to a broader perception that they lack control over their lives.2 3 Young patients living with JIA, for instance, believe themselves to be “trapped in a perpetual limbo, oscillating between … ER -