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Sarajevo, Disability Monitor Initiative for South East Europe, Handicap International Regional Ofce for South East Europe, 2008. Violence and abuse in the lives of people with disabilities: the end of silent acceptance? The Standard Rules on the Equalization of Opportunities for Persons with Disabilities. Adopted by the United Nations General Assembly, forty-eighth session, resolution 48/96, annex, of 20 December 1993. Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia. Mental Retardation and Developmental Disabilities Research Reviews, 2001,7:115-121. Competing visions: refereed proceed ings of the National Social Policy Conference 2001. Sydney, Social Policy Research Center, University of New South Wales, 2002:263–278. Better health, better lives: children and young people with intellectual disabilities and their families. Bucharest, World Health Organization Europe, 2010 (Background paper for the conference, 26–27 November). Shifting the paradigm in social service provision: making quality services accessible for people with disabilities in South East Europe. Deinstitutionalisation and community living— outcomes and costs: report of a European study [Volume 2: Main report]. What policies and policy processes are needed to ensure that people with psychiatric disabilities have access to appropriate housing? Deinstitutionalization of persons with developmental disabilities: a technical assistance report for legislators. Outcomes and costs of residential services for adults with intellectual disabilities in Taiwan: A comparative evaluation. Costs and outcomes of community services for people with intellectual disabilities. Cost of independence: cost-beneft analysis of investing in the organization of personal assistant service for persons with disabilities in Serbia. Personal assistance for children and adolescents (0–18) with intellectual impairments. Personal assistance for adults (19–64) with both physical and intellectual impairments. Gate keeping: urgent need for reform to ensure fair and efective access to social protection entitlements. Ondersteuning gewenst, Mensen met lichamelijke beperkingen en hun voorzieningen op het terrein van wonen, zorg, vervoer en welzijn (Support is Desired, people with physical disabilities and their support in the domains of living, care, transportation and well-being). Beyond de-institutionalization: the unsteady transition towards an enabling system in South East Europe.
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Unfortunately “his recovery was incomplete “and he was left with some loss of sensation. Although this case occurred in a person with Her’s disease, there is also a single reported case of compartment syndrome in a McArdle person who performed the ischaemic forearm test (Lindner et al. General recommendations (for people unaffected by McArdle’s) are that a patient’s own and family history (information about previous cases of compartment syndrome) should be obtained. Tourniquet time should be limited to less than 90 minutes, and that the tourniquet should be released before encasing a muscle in a solid cast (such as that used on a broken arm). Ideally the surgeon would avoid use of a tourniquet or cuff, although this would have to be balanced against the risk of not using it (for example if a person might bleed to death). If a tourniquet is still needed, the surgeon should be informed about the possible risk of muscle damage with subsequent myoglobinuria (Bollig et al. Medical advice should be sought urgently if, after carrying out an ischaemic forearm exercise test, a loss of sensation is felt in the fingers, continued pain is present, and an inability to extend (move) the fingers. I have heard an anecdotal case where a McArdle person became very angry so that their muscles all tensed up, resulting in contractures and rhabdomyolysis. This is because if the muscles run out of energy whilst a McArdle person is swimming, they will not be able to tread water or swim to safety. There is a published report of a 6 year old McArdle’s child who almost drowned whilst swimming (prior to being diagnosed with McArdle’s) (Roubertie et al. Anecdotally, some McArdle people report that treatment by a physiotherapist can cause muscle pain and potentially muscle damage. Uric acid can be produced during the breakdown of purines in food during digestion. It is also possible that level of uric acid may increase in the blood following exercise, although whether this is the case, and what the mechanism could be is still unclear (McCrudden, 2008). There is some evidence that having McArdle’s may increase the risk of having gout. They carried out investigations to measure the amount of purine in the blood and urine after the McArdle person had vigorously exercised, but did not see an increase in the level of uric acid in the blood or urine. There therefore concluded that “in this patient, the association of McArdle disease with gout is coincidental”. They found that when the McArdle man carried out aerobic exercise using a bicycle ergometer, it led to an increase in uric acid. Exercise seemed to make the muscles speed up the rate of purine degradation, which increased the levels of uric acid.
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In this analysis, the planned sample was a maximum of 50 patients (n = 25 per group), which leads to 94. A total of 46 patients completed the study at time of analysis with the remaining planned to conclude in February 2019. Method: Guided by a Global Expert Advisory Panel with patient and clinical representation, the study included a literature review of global trends in incidence, mortality, and survival of ovarian cancer, qualitative interviews with women and clinicians in 16 countries, and an online survey available in 15 different languages (open March to May 2018). Given global 5-year prevalence, results in this survey achieve a confidence level of 95% with a confidence interval of ±2. Results: With global incidence set to rise by 55% to 371,000 a year, 5-year survival rates of less than 50%, and 15% dying within 2 months of diagnosis, urgent action is required to improve survival. More than two-thirds of woman had not heard of ovarian cancer or knew anything about it prior to their own diagnosis. Ninety percent of respondents reported experiencing multiple symptoms prior to their diagnosis regardless of type. There were wide variations between countries and in the subsequent time to diagnosis. There were wide levels of variation in genetic testing, both pre and post-diagnosis, by country (9. Of those women with 2 or more relatives with ovarian cancer, 80% had not had genetic testing prior to their diagnosis. Clinicians indicate that access to specialist treatment in high-volume centers varies widely by country and region. Conclusion: Low level of awareness of ovarian cancer is a global problem resulting in delays in women seeking medical attention and being diagnosed. Women are potentially missing out on new targeted treatments for ovarian cancer, and family members are unaware of risk because of variable rates of genetic testing. Ensuring that all woman have access to specialist 58 treatment is a vital step to improving outcomes worldwide. In phase 2 an online survey was publicized through various online and print channels throughout the period of both phase 1 and phase 3. Results: Significant numbers experienced, or continue to be affected by, several, often complex, long-term consequences of their diagnosis and treatment including the following: 86% experienced at least 1 physical long-term consequence; 63% experienced 3 or more; and 24% experienced 6 or more. Of which 67% experienced changes in their sex life; 64% suffered fatigue; 54% bowel difficulties; 54% urinary difficulties; 44% lymphedema; and 60% said employment changed due to their treatment. High numbers hadn’t sought medical advice about the difficulties experienced including 39% who had changes to bowel function and 42% urinary function; 59% with negative changes to or a complete loss of sex life; 44% affected by pain and/or fatigue; and only 32% who have experienced reduced, or even lost, fertility talked to a physician.
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The number of countries with preva aged 0–14 years, many of the most common lence rates above 1 per 10 000 population fell health conditions were related to difcul from 122 in 1985 to 12 in 2002. They included learning dis Madagascar, Mozambique, and Nepal are abilities, specifcally autism and attention the most endemic countries (62). Other health conditions found population groups in 40 developing coun in young people included speech problems, tries, afecting about 84 million people, 8 dyslexia, cerebral palsy, vision disorders, million of them visually impaired (63). Heart problems were second, eases (heart disease and stroke), mental disor accounting for 23%. The other main disa ders, cancer, and respiratory illnesses, observed bling conditions were hypertension, back in all parts of the world, will have a profound or neck problems, diabetes, vision disor efect on disability (65–73). Several factors help explain the upward In a 1998 population survey in Australia trend: population ageing, reduction in infec of people (of all ages) with disabilities, the tious conditions, lower fertility, and changing most common disability-related health lifestyles related to tobacco, alcohol, diet, and conditions reported were: arthritis, back physical activity (39, 65, 79, 80). Assistance for people with disabilities in confict situations Armed conflict generates injuries and trauma that can result in disabilities. For those incurring such injuries, the situation is often exacerbated by delays in obtaining emergency health care and longer-term rehabilitation. In 2009 in Gaza an assessment found such problems as (81): complications and long-term disability from traumatic injuries, from lack of appropriate follow-up; complications and premature mortality in individuals with chronic diseases, as a result of suspended treatment and delayed access to health care; permanent hearing loss caused by explosions, stemming from the lack of early screening and appropriate treatment; long-term mental health problems from the continuing insecurity and the lack of protection. As many as half of the 5000 men, women, and children injured over the first three weeks of the conflict could have permanent impairments, aggravated by the inability of rehabilitation workers to provide early intervention (82). In situations of conflict, those with disabilities are entitled to assistance and protection. Humanitarian organiza tions do not always respond to the needs of people with disabilities promptly, and gaining access to persons with disabilities who are scattered among affected communities can be difficult. A variety of measures can reduce the vulnerability of persons with disabilities including: effective planning to meet disability needs by humanitarian organizations before crises; assessments of the specific needs of people with disabilities; provisions of appropriate services; referral and follow-up services where necessary. The needs of families and carers must also be taken into account, both among the displaced population and in the host communities. In emergencies linked to conflicts, the measures need to be flexible and capable of following the target population, adjusting quickly as the situation evolves. In Belgium a study Injuries using the country’s Ofcial Disability Rating Road trafc injury, occupational injury, vio Scale (a tool insurance companies use to assess lence, and humanitarian crises have long been disability rates among specifc patients) found recognized as contributors to disability (see that 11% of workers injured in a road trafc Box 2. However, data on the magnitude crash on their way to or from work sustained of their contribution are very limited. In Sweden 10% of surveillance tends to focus exclusively on near all car occupants with an Abbreviated Injury term outcomes such as mortality or the acute Scale of 1 (the lowest injury score) sustained a care consequences of injury (83). A recent systematic review of the risk of Demographics disability among motor vehicle drivers sur viving crashes showed substantial variability Older persons in derived estimates. Prevalence estimates of post-crash disability varied from 2% to 87%, Global ageing has a major infuence on disabil largely a result of the methodological dif ity trends.
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