Morgan Delarue I am 31 years old and, since birth, I have had an overgrowth of my left lower limb, which progressively became associated with lymphangiectasia and varicosities (Figure 1a). I was diagnosed with CLOVES syndrome, which belongs to the PIK3CA-related overgrowth spectrum (PROS).1 Before identification of the PIK3CA genetic variant, I was successively diagnosed with Proteus syndrome in infancy and later with Klippel–Trenaunay syndrome. My ‘disease’ changed as the terminology evolved. These changing names were a bit confusing; however, it reveals improvement in disease understanding. PROS is a chronic and burdensome condition, responsible for significant aesthetic impairment and recurrent pain of varying intensity. During severe flares, the pain can even prevent me from carrying out certain daily activities. Despite this, I am passionate about photography, motorcycles and Formula 1 high-speed cars—interests that tend to worry my physicians. I underwent multiple therapies and multidisciplinary consultations, including surgery, sclerotherapy, topical sirolimus2 and treatment with alpelisib3 within research protocols. These therapies helped control disease progression. Throughout my medical history, beginning in childhood, I have always been very sensitive to the words used by caregivers. Positive words strengthened me, whereas negative ones had a profound and sometimes dramatic impact. I can testify that the way caregivers speak to patients truly matters, as their words can directly influence a patient's emotional state and experience of illness. Positive encounters were those in which caregivers listened to me—to my feelings and to the difficulties I was facing. In chronic diseases, patients know their condition well and are often able to recognize unusual or alarming signs. It is therefore essential that caregivers take the time to listen and trust patients when they feel that something is changing in relation to their disease. Conversely, a negative remark can deeply harm a patient and undermine their capacity to cope. I personally experienced situations in which caregivers reproached me for not being sufficiently vigilant or observant and made me feel guilty about complications of my disease; even when there was no harmful intent, these remarks—sometimes reflecting a lack of attentive listening, fatigue or professional weariness—had long-lasting and devastating effects on me. Ultimately, as a patient, I deeply wish for a relationship of trust with caregivers—one that allows for shared decision-making between the patient and the physician.4 Caroline Soares I am the mother of a 14-year-old girl with PROS affecting her left lower limb1 (Figure 1b). Her condition limits her daily activities because of pain and a sensation of limb heaviness; she cannot walk or run as easily as other children. She has undergone sclerotherapy and medical treatments (sirolimus5 and, more recently, alpelisib4 within a research protocol), and wears compression garments due to varicosities. Beyond the physical limitations, the disease represents a substantial emotional and time burden for both my daughter and our family, with ongoing worry, repeated medical appointments and the constant need to adapt daily life to her condition. My own experience as a parent was emotionally difficult at the time of her birth. She presented with clinical signs that were unfamiliar to many caregivers at the time, and I often felt that she was examined out of curiosity rather than truly cared for—as if she were a rare exhibit. I do not want my daughter to be seen as a ‘rare case’. Kindness and gentleness are central to care. These children grow up faster than others: they become familiar early with hospitals, medications, they face stigmatization, and they mature quickly as a result. According to me, shared decision-making between caregivers, parents and the child, grounded in attentive and compassionate listening, is key to successful care. We are grateful to Mrs. Silvine Taillard from the Clinical Investigation Center of Tours, France, and to Prof. Sophie Leducq, Dr. Aline Joly, Dr. Anne Le Touze, Prof. Grégoire Boulouis, Prof. Denis Herbreteau, Prof. Arnaud Paré and Mrs. Émilienne Édée, from the MAGEC-Tours Reference Center, France, for their contribution to the management of patients with superficial vascular anomalies. None. All co-authors were involved as patients or investigators in research protocols evaluating topical sirolimus and alpelisib; they report no personal financial interests. Not applicable. The patients or the patient's parents/guardians in this manuscript have given written informed consent to the publication of their case details. Data sharing is not applicable to this article as no new data were created or analyzed in this study.
Delarue et al. (Mon,) studied this question.