Neuseli Lamari
Physiotherapist, Founder, Lamari Clinic, university professor at FAMERP
Neuseli Marino Lamari, physiotherapist, university professor at the Medical School of São José do Rio Preto (FAMERP) – Department of Neurological Sciences, Psychiatry and Medical Psychology.
Master's and doctoral degrees in health sciences, associate professor of physiotherapy, advisor in three multiprofessional residency programs – FAMERP – Ministry of Education and Health.
Founder, member, and technical manager for 41 years of the Lamari Clinic, which is a reference center for Ehlers-Danlos syndromes and Hypermobility in Brazil.
Member of Extended Working Group of the Brazilian Health Ministry for the drafting of Ordinance No. 199 of January 30th, 2014, which established the National Policy of Integral Care for People with Rare Diseases.
Member of Extended Working Group Extended Working Group of the Brazilian Health Ministry for the drafting of the Guidelines for Comprehensive Health Care for Women with Disabilities and Reduced Mobility (2015 – 2016).
Founder and organizer of international congresses on Hypermobility, Ehlers-Danlos Syndrome and Pain in 2013, 2015, 2017, 2021 and scheduled for 2024.
Cited in the book “Ehlers-Danlos: La maladie oubliée par la medícine” (published in France in 2018 by French physician Claude Hamonet) among the 12 professionals worldwide as a reference in the topic of hypermobility and Ehlers-Danlos syndromes.
Cited in the book "Ehlers-Danlos Hipermovible Disautonomía y Fibromialgia" (published in Chile by rheumatologist Dr. Jaime Bravo), among the six pioneering professors in this disease.
Author with Prof. Dr. Peter Beighton (medical geneticist – University of Cape Town - author of the Hypermobility assessment criteria) of the book "Hypermobility in Medical Practice." Springer Nature. 2023. Author of several national and international scientific articles. Speaker at various international congresses.
Interviewed by the most-watched TV network in Brazil in 2015 and 2020 as a reference in hypermobility and Ehlers-Danlos syndrome.
Objectives: To identify psychosocial and motor aspects among Brazilian of both genders with JH, to characterize JH using the Beighton's total score in function of gender and age; by "growing pain," to verify manifestations such as fatigue, attention deficit, anxiety, insomnia, sleepiness, apathy/quietness, depression, delayed ambulation, inability to crawl or difference in crawling technique, impaired spatial and/or temporal orientation, social isolation, and having been stigmatized as "lazy/clumsy/stubborn/quiet."
Methods: This retrospective, observational, quantitative, and cross-sectional study used data obtained through analyses of descriptive and inferential crossings between 2012 and 2020 of 482 medical records of individuals between 1 and 76 years of age, from most Brazilian states. All patients previously diagnosed with “joint hypermobility syndrome” and “Ehlers-Danlos syndrome hypermobility type”, had their medical records reassessed, following the guidelines established in 2017. Analysis of JH using the method proposed by Beighton et al (1973) included determining the ability of a person to sit in the "W" position, in the "concave" position and identifying characteristics of the hands and the presence of "growing pains." Descriptive and inferential statistics were used.
Results: In the complete sample, JH, predominant in the upper limbs, indicated that the majority of the participants were females, ≥ 15 years of age; 64.73% had a total Beighton score of ≥6, which decreased with increasing age. Among the characteristics of psychosocial implications, fatigue predominated, followed by being labeled as clumsy / stubborn / restless individuals, attention deficit, anxiety, stigmatization as "lazy," insomnia, sleepiness, apathy / restlessness, depression, impaired spatial and/or temporal orientation, and social isolation. Among the participants, lower limb pain was reported by 55.81% and "growing pain" by 36.93%. Delayed walking was seen in 19.92%, 15.35% did not crawl or crawled differently, and impaired school performance in 12.86%. Higher total Beighton scores showed a tendency for motor implications and correlation between the variables.
Conclusion: JH was predominant in the upper limbs; most of whom were females, aged ≥15 years, with the Beighton total score of ≥6 in all age-groups. Psychosocial aspects in people with JH are suggestive of increasing evolution since childhood, also influenced by atypical postural patterns, pain, and inadequate motor performance. Predominant total scores in the upper limbs were suggestive of inability to crawl or crawling differently. Higher total Beighton scores showed a tendency not to crawl, to crawl differently, and a tendency for impaired school performance and delayed ambulation. Most are capable of always sitting in the "concave" position and the "W" position, a condition possible for just under half of the total sample. Both sacrifice hip structures and favor falls. Growing pain" is predominantly located in the lower limbs and occurs in more than one third of the total sample. Lower limb pain since childhood, inadequate motor performance, and JH of the hand with impaired functions contributes to explain the psychosocial implications in this population.