Ehlers-Danlos Syndrome: Woman starts hospital navigation website

A woman starts a website to help disabled people navigate hospitals and flag up their facilities.
Source: BBC News | Health | UK Edition - Category: Consumer Health News Source Type: news

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Conclusions: The use of custom-made foot orthoses help in the management of the symptoms by participants. This study could contribute to the foot specialists being considered as an additional member in multidisciplinary teams that are trying to develop an approach for patients with EDS.
Source: International Journal of Environmental Research and Public Health - Category: Environmental Health Authors: Tags: Article Source Type: research
Conclusions: The complexity and existential internal conflict related to physical exercise seemed to be a huge dilemma among persons with Hereditable Thoracic Aortic Disease. The balance between safe and healthy activities should be a research priority in these groups.Implications for rehabilitationPhysical activity and exercise pose a difficult dilemma for patients with Hereditable Thoracic Aortic Disease, in terms of what is healthy and what is dangerous.People with Hereditable Thoracic Aortic Disease need help to minimize concern, stress and anxiety associated with exercise.Individualized adapted programs including phys...
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
Conclusions: The results highlight the significant psychosocial impact on participants' lives. Coping approaches identified included acceptance, building social networks, learning about joint hypermobility, and adapting activities. Physiotherapists supported regular exercise. Further research should consider potential interventions to improve information provision, address psychological support, and increase awareness of hypermobility among healthcare professionals. Implications for rehabilitation Participants who had help from family members to complete activities described guilt and shame, highlighting the need for a gre...
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
Conclusion: There are specific reasons for a person with "hypermobile EDS" to participate in employment. These reasons are different for each person and may even vary in time. Implications for rehabilitation "Hypermobile EDS" greatly impacts activities and participation in daily life. "Living with limitations" is the central theme in the lives of "Hypermobile EDS" patients. Various aspects influence work participation in people with "Hypermobile EDS", such as work pressure, tasks, and transport to work. Work has positive effects in the lives of people with "Hypermobile...
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
CONCLUSIONS: The participants in this study had a high percentage of foot problems related to high levels of pain and limited functionality in the feet. The quality of life of these patients appeared diminished. Foot types were observed according to the footprint and deformities similar to those of the general population. PMID: 31255365 [PubMed - as supplied by publisher]
Source: Medicina Clinica - Category: General Medicine Tags: Med Clin (Barc) Source Type: research
CONCLUSION: These results confirm previous research concerning the high disease burden observed in hEDS patients, and highlight the importance of multidisciplinary management that includes nutritional and psychological advice to address this pathology. Increasing awareness of the clinical aspects of hEDS among physicians is necessary to reduce diagnostic delay and minimize negatives outcomes. Implications for Rehabilitation A high proportion of patients with hypermobile Ehlers-Danlos syndrome suffer from severe pain (>42%) and a high level of mobility disability (>65%). Different psychosocial and health variables pre...
Source: Disability and Rehabilitation - Category: Rehabilitation Authors: Tags: Disabil Rehabil Source Type: research
AbstractAttention-deficit/hyperactivity disorder (ADHD) and generalized joint hypermobility (JH) are two separated conditions, assessed, and managed by different specialists without overlapping interests. Recently, some researchers highlighted an unexpected association between these two clinical entities. This happens in a scenario of increasing awareness on the protean detrimental effects that congenital anomalies of the connective tissue may have on human health and development. To review pertinent literature to identify possible connections between ADHD and GJH, special emphasis was put on musculoskeletal pain and syndr...
Source: ADHD Attention Deficit and Hyperactivity Disorders - Category: Psychiatry Source Type: research
AbstractGastrointestinal symptoms are among the most common complaints in patients with postural tachycardia syndrome (POTS). In some cases, they dominate the clinical presentation and cause substantial disabilities, including significant weight loss and malnutrition, that require the use of invasive treatment to support caloric intake. Multiple cross-sectional studies have reported a high prevalence of gastrointestinal symptoms in POTS patients with connective tissue diseases, such as Ehlers –Danlos, hypermobile type, and in patients with evidence of autonomic neuropathy. Previous studies that evaluated gastric moti...
Source: Clinical Autonomic Research - Category: Research Source Type: research
ABSTRACT Ehlers‐Danlos syndrome classical type (cEDS) is a connective tissue disorder characterized by skin hyperextensibility, atrophic scarring, and joint hypermobility. The condition typically results from mutations in COL5A1 or COL5A2 leading to the functional haploinsufficiency. Here, we report of a 24‐year‐old male with mild intellectual disability, dysmorphic features, and a phenotype consistent with cEDS. A copy number variant‐calling algorithm from panel sequencing data identified the deletions exons 2‐11 and duplications of exons 12‐67 within COL5A1. Array comparative genomic hybridization confirmed a...
Source: Congenital Anomalies - Category: Genetics & Stem Cells Authors: Tags: Case Report Source Type: research
AbstractAttention-deficit/hyperactivity disorder (ADHD) and generalized joint hypermobility (JH) are two separated conditions, assessed, and managed by different specialists without overlapping interests. Recently, some researchers highlighted an unexpected association between these two clinical entities. This happens in a scenario of increasing awareness on the protean detrimental effects that congenital anomalies of the connective tissue may have on human health and development. To review pertinent literature to identify possible connections between ADHD and GJH, special emphasis was put on musculoskeletal pain and syndr...
Source: ADHD Attention Deficit and Hyperactivity Disorders - Category: Psychiatry Source Type: research
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