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In other words doctor's advice on erectile dysfunction buy 30 pills provestra with visa, how the people around your child are responding to erectile dysfunction wiki provestra 30 pills visa his behavior might be making his situation even more stressful and challenging erectile dysfunction caused by spinal stenosis 30 pills provestra overnight delivery. More discussion of the effects of intervention is included in the behavioral section that comes later in this to erectile dysfunction doctors in st louis mo buy cheap provestra online ol kit. Medication If your loved one takes medicine, it might also be worthwhile to talk to your doc to r about the possible effects on behavior. These side effects can sometimes be quite significant and can change an individual’s sensitivity or ability to regulate. For example, some medications can be o to to xic—which means they might be damaging to the ears, causing sound sensitivities, dizziness or balance issues. Other medications might cause s to mach pain in a person who never had digestive issues before. It is not just traditional psychotropic (acting on the brain) medications that need to be considered. It is possible that a prescription for acne medication might be having an effect that might trigger new behavior. Carefully review side effect lists and discuss the side effect profiles of each medicine with your doc to r, especially in someone who might not be able to report on his symp to ms. In considering medication, note that proper dosage can be very sensitive, particularly in individuals with autism. Sometimes to o much medication can be over-stimulating or sedating (tiring), perhaps even causing the person to find other ways (through new or difficult behaviors) to try to get back to a sense of stability or nor mality. Layering on multiple medications at one time, called poly pharmacy, can also have unintended effects. Some doc to rs have reported success in slowly tak ing a person off all medications to re-establish ‘baseline’ in an effort to sort out ‘what is the autismfi As time went on, Jack didn’t sleep for 48 hours sometimes, and we were all a mess as he was bouncing off the walls. We couldn’t imagine what he would be like without the benefit of those calming meds. Eventually we tried a weekend drug holiday as they often suggest for stimulants, and he was lethargic the whole weekend. In hindsight it seems obvious, but in the moment, it was hard to see the relationship. For example, a larger teen might need more medication to achieve the same effect on attention or anxiety. Medical expertise specific to autism is often quite helpful in carefully determining the right pharmacological interventions for an individual at any point in time. Families often struggle with decisions about the role of medication in addressing challenging behaviors, and when and what kinds of medication might be useful. This Medication Guide is designed to help in defining your values and goals surrounding medication use. It also provides perspective and talking points to assist in speaking with your doc to r and making decisions. It can be used for new medication decisions, or in re-evaluating current medications. If medication is started, it is important to track side effects and look for other concerns to ensure that the medication is helping where it is supposed to help, and not causing other problems. Sometimes a provider might use a measurement to ol that involves asking the family or staff questions prior to starting a medication or other intervention. The provider might repeat this test after a few weeks or months as a way of measuring the effects of the medication. It is wise to have multiple responders, as well as to compare baseline and follow-up responses from the same person. The use of simple tracking scales for both target behaviors and side effects is another way to assess the effects of a medication. This might be undertaken in cooperation with a behavioral provider or team using their data collection systems, or you could create or modify something like this tracking scale: Date: Medication Name: Medication Dose: Behavior/Symp to m Occurred Morning Midday Evening Burping Sleepiness Uses iPad to make request Hitting Kicking Other “We did not like the weight gain associated with the meds that Sammy was on, and we weren’t even sure it was helping. So, every few months, I would decrease his dose just as the doc to r instructed, and I would start on a Friday so that we would be able to see changes that we wouldn’t see while he was off at school. I would not tell my husband, so that at least one of us was getting a ‘blinded’ view of any changes. By Sunday afternoon, in the midst of some frustrating situation, he would say, ‘are you doing that meds withdrawal experiment with Sammy againfi Often, if we know something is supposed to help in a certain way, we are more likely to see it, even if it is not really there. For example, if you tell the lead teacher about a new medication but not the classroom aides, you might get better information from the team about the true effects of a medication on your child’s behavior. Sometimes adjusting dosage, form (some medications come in time-release forms for more even delivery), time of delivery (before vs. Being a careful observer and a good reporter to your doc to r, and discussing both the benefits and downsides of a medication in advance and as the intervention progresses, can often help to manage a medication so that it is most helpful. Using a chart such as the one above can help you to see if the medication is effective. If medical concerns are a feature of your loved one’s profile, it is important to maintain good records and share information among team members. Behavioral Considerations When a person behaves in a way we find difficult or offensive, we often reflect on the impact of that person’s actions on us—how we feel threatened or embarrassed or hurt. Instead, it is important to think about the behavior from the individual’s perspective. What is so scary about entering this place that my child is so panicked that he has to bite mefi What pain is occurring in his body that he might be trying to over ride it by hitting himself in the headfi Shifting our thinking from how a particular behavior affects us (and the siblings, the classmates, the furniture, etc. Understanding the behavior will allow you to support the replacement of disturbing or maladaptive behaviors with functional skills. Going back to the basics of behavior, it is important to consider the possible purpose or function. Does it allow him to assert a little bit of control over his life or surroundingsfi Taking the time to understand the function can often give a window in to the motivation behind the behavior. Proper evaluation of function is usually essential to crafting an appropriate response. For example, suppose a child kicks when it is time to go to gym class and the response to his kicking is to put him in a ‘time out. He just got what he wanted, and he learned that kicking is an effective way of making his argument. But if kicking keeps him out of the loud, echoing chaos of gym that he finds hurtful or disturbing, he is likely to use the communication he has learned unless and until he is taught a better way of coping with gym class. Autism Speaks and Autism Speaks It’s Time To Listen & Design are trademarks owned by Autism Speaks Inc. They should also seek to be empathetic and to understand why the person might feel the need to behave in a certain way. Make sure your provider is using a broad approach, since this is essential to getting a good handle on the concerns, potential causes of the behavior, and possible interventions and solutions for replacing this behavior with skills. If they do not have this expertise on staff, they need to secure these services through other agencies or consultants. Some schools will provide additional training and instruction in the home, or through other community providers such as wraparound supports. Behavioral interventions through your health insurance provider may also be able to provide this support. If you do not have access to a behavioral support provider or team, you can begin to become a more advanced observer of the elements of behavior yourself. Tools such as Barbara Doyle’s data collection and communication dictionary might be helpful. Using Positive Behavior Supports is a way to promote functional skill development and motivation and can be used at home, school, work, and in the community.
Memory creation Aspect Consideration • Parents may or may not wish to erectile dysfunction medicines buy genuine provestra create memories of their pregnancy/baby • Discuss options for memory creation with the parents as appropriate to erectile dysfunction and diabetes treatment cheap provestra 30 pills amex the gestational age common causes erectile dysfunction 30 pills provestra overnight delivery, circumstances and cultural preferences • Obtain parental consent prior to erectile dysfunction and pregnancy cheap 30pills provestra fast delivery creating/gathering memen to s (as may not Individual always be culturally appropriate) preferences • Where immediate memen to creation is declined, offer to provide memen to s to parents (or family) in a sealed envelope for future access o S to ring memen to s with hospital records is not recommended as they may be lost or misplaced especially as electronic medical records become more common and replace hard copy records • Where desired, give parents the opportunity to see and/or hold their baby o Some women wish to avoid this, whereas others may place importance 91,93 on seeing their baby o Prepare the woman/family for what they may see Seeing the baby • Following second trimester loss, it may be possible to collect memories such as pho to graphs, handprints and footprints, or to bath the baby o Complete all swabs and tests on baby before bathing • Offer options to include extended family. Even where there is no legal requirement for a funeral, burial or cremation, parents may still desire this option or return months, or even years, later to enquire about the manner in which their baby was 99 disposed of. Sensitive disposal of fetal remains Consideration Recommendation • It is compulsory to register the birth of a baby born in Queensland if any of the following conditions are met. Baby is: o Born alive (a baby whose heart has beaten after delivery of the baby is 100 completed) o 20 weeks or more gestation o 400 g or more • If birth registration is compulsory. Diagnostic value of serum hcg on the outcome of pregnancy of unknown location: A systematic review and meta-analysis. A prospective longitudinal population-based study of clinical miscarriage in an urban swedish population. The health system and emotional care: Validating the many meanings of spontaneous pregnancy loss. The medical management of missed miscarriage: Outcomes from a prospective, single-centre, australian cohort. Symp to matic patients with an early viable intrauterine pregnancy: Hcg curves redefined. Managing pregnancy of unknown location based on initial serum progesterone and serial serum hcg levels: Development and validation of a two-step triage pro to col. Management of interstitial ec to pic pregnancy with intravenous methotrexate: An extended study of a standardised regimen. Morbid obesity and outcome of ec to pic pregnancy following capped single-dose regimen methotrexate. Adelaide: Australian Medicines Handbook Pty Ltd; July 2016 [cited 2016 Oc to ber 10]. Huchon C, Deffieux X, Beucher G, Capmas P, Carcopino X, Costedoat-Chalumeau N, et al. Refer to online version, destroy printed copies after use Page 33 of 39 Queensland Clinical Guideline: Early pregnancy loss 41. Utility of betahcg moni to ring in the follow-up of medical management of miscarriage. A comparison of medical management with misopros to l and surgical management for early pregnancy failure. Bleeding patterns after misopros to l vs surgical treatment of early pregnancy failure: Results from a randomized trial. Cervical ripening before first trimester surgical evacuation for non-viable pregnancy. Adelaide: Australian Medicines Handbook Pty Ltd; July 2016 [cited 2016 November 11]. Expectant versus surgical management of first-trimester miscarriage: A randomised controlled study. Age-specific risk of fetal loss observed in a second trimester serum screening population. Institute of Obstetricians and Gynaecologists, Royal College of Physicians of Ireland, Direc to rate of Strategy and Clinical Programmes Health Services Executive. Uterine rupture in second-trimester misopros to l-induced abortion after cesarean delivery: A systematic review. The care of women requesting induced abortion (evidence-based clinical guideline no. Guidelines on the prophylactic use of rh d immunoglobulin (anti-d) in obstetrics. Prevalence of maternal red cell alloimmunisation: A population study from queensland, australia. Bcsh guideline for the use of anti-d immunoglobulin for the prevention of haemolytic disease of the fetus and newborn. Rhophylac Human Anti-D immunoglobulin, solution for injection in a pre-filled syringe. Expert panel consensus position statement regarding the use of rh(d) immunoglobulin in patients with a body mass index >30. Formalised consensus of the european organisation for treatment of trophoblastic diseases on management of gestational trophoblastic diseases. Persistence and malignant sequelae of gestational trophoblastic disease: Clinical presentation, diagnosis, treatment and outcome. Refer to online version, destroy printed copies after use Page 34 of 39 Queensland Clinical Guideline: Early pregnancy loss 80. The loss of possibility: Scientisation of death and the special case of early miscarriage. Provision of information and support to women who have suffered an early miscarriage. Adjustment after miscarriage: Predicting positive mental health trajec to ries among young australian women. Women’s experience of care at a specialised miscarriage unit: An interpretative phenomenological study. Risk fac to rs and interventions for psychological sequelae in women after miscarriage. Negotiating the transition: Caring for women through the experience of early miscarriage. The investigation and treatment of couples with recurrent first trimester and second-trimester miscarriage. Guidance on the disposal of pregnancy remains following pregnancy loss or terminationissued. Women’s experience of care at a specialised miscarriage unit: an interpretative phenomenological study. Ec to pic pregnancy For many reasons, men and women who want to have children should not almost always causes the fetus to die and is potentially fatal for the mother. Studies have long shown that smoking and exposure to to bacco Evidence also suggests that spontaneous abortion, or miscarriage, is smoke are harmful to reproductive health. Report on smoking and health says that to bacco use during pregnancy l Fetal growth: Mothers who smoke during pregnancy are more likely to remains a major preventable cause of disease and death of mother, fetus, deliver babies with low birth weight, even if the babies are full term. Mothers who smoke during pregnancy are also more likely to deliver their babies early. Maternal smoking and exposure to secondhand smoke endanger the health l Fetal development: Smoking during pregnancy can cause tissue damage of the mother and the baby. Each year, about 400,000 infants born in the in the fetus, especially in the lungs and brain. Carbon monoxide in to bacco United States are exposed to the chemicals in cigarette smoke before birth smoke is a dangerous to xin that can harm the central nervous system and because their mothers smoke. Damage from maternal smoking can last throughout smoking and health was released in 1964, 100,000 babies have died from childhood and in to the teenage years. The following are ways smoking afects fertility and the pregnancy are more likely to deliver babies with cleft lip and/or cleft health of a pregnancy: palate, where the lip or the roof of the mouth fails to form correctly. Studies suggest that smoking afects hormone hearing, and speech development; dental problems, including missing production, which can make it more difcult for women smokers to teeth; and middle ear infections. Cigarette smoke alters blood fow needed for an erection, and smoking interferes with the healthy function of blood vessels in erectile tissue. Women and men who want to have children can talk Cigarette smoke alters blood fow with their doc to rs about getting help to quit smoking before pregnancy. Every effort has been made to make this book refiect the most up- to -date medical advice at the time of publication. Because developments can be very rapid, significant changes will always be notified to doc to rs and other health professionals at once. For the most up- to -date information and advice, visit the online version of the book (pregnancy planner) at And then there is all the information on the internet as well as in magazines and books. At times it can feel overwhelming and it’s hard to know who is right when people say different things. This book brings to gether everything you need to know to have a healthy and happy pregnancy, and to make sure you get the care that is right for you. If you do to take this until you are 12 choose to drink, then protect weeks pregnant (see page 27). You are more likely to get pregnant if you are • Talk to your both in good health.
Distal lesions affecting branches of the posterior interosseous branch of the radial nerve may produce more circumscribed deformity erectile dysfunction treatment protocol cheap provestra online visa, such as weak extension of metacarpophalangeal joints (‘finger drop’ impotence in the bible buy provestra american express, ‘thumb drop’) erectile dysfunction age 25 order 30pills provestra with amex. Writer’s Cramp Writer’s cramp erectile dysfunction cause of divorce order provestra with a mastercard, also known as graphospasm, la crampe des ecrivains,or scrivener’s palsy, is a focal dys to nia involving the hand and/or arm muscles, caus ing abnormal posturing of the hand when writing; it is the most common of the task-specific dys to nias (once known as ‘craft palsies’). A tremor may also develop, not to be confused with primary writing tremor in which there is no dys to nia. Attempts to use the contralateral hand may be made, but this to o may become affected with time (‘mirror dys to nia’). Yo-yo-ing is difficult to treat: approaches include dose fractionation, improved drug absorption, or use of dopaminergic agonists with concurrent reduction in levodopa dosage. Zooagnosia the term zooagnosia has been used to describe a difficulty in recognizing ani mal faces. In a patient with developmental prosopagnosia seen by the author, there was no subjective awareness that animals such as dogs might have faces. Of these elements, mental well-being his to rically has been misunders to od and often forgotten. Thanks greatly to their hard work, mental health now ranks as a priority within the international health and development agenda. Governments across the world and health pro fessionals across the disciplines are now more aware of the importance of mental health issues to the overall health of individuals, communities, cities, and even entire nations. Promoting Mental Health: Concepts, Emerging Evidence, Practice clarifies the concept of mental health promotion and is a potent to ol for guiding public officials and medical professionals in addressing the behavioural health needs of their societies. It presents striking evidence that there is a strong link between the protection of basic civil, political, economic, social, and cultural rights of people and their mental health. In these times, when conflicts between individuals and com munities are on the increase and economic disparities are widening, this message is especially relevant. Good mental health goes hand in hand with peace, stability and success, and Promoting Mental Health presents a powerful case for including mental health promotion in the public health policies of all countries. Promoting Mental Health: Concepts, Emerging Evidence, Practice emphasizes that everyone has a role and responsibility in mental health promotion and encourages integrated participation from a variety of sec to rs such as education, work, environment, urban planning and community development as the best way to make the most positive improvement in people’s mental health. It appropriately focuses on resource-poor settings; however, money is not the key determinant to ensure good mental health. Awareness and active involvement by each member of the commu nity often have the greatest impact. Unfortunately, health professionals and health planners are often to o preoccupied with the imme diate problems of those who have a disease to be able to pay attention to needs of those who are “well”. They also find it difficult to ensure that the rapidly changing social and environmental conditions in countries around the world support rather than threaten mental health. This situa tion is only partly based on the lack of clear concepts or of adequate evidence for effectiveness for health promoting interventions. This has much to do with how the professionals and planners are trained, what they see as their role in society and, in turn, what society expects them to do. In the case of mental health, this also has to do with our reluctance to discuss mental health issues openly. It tries to arrive at a degree of consensus on common characteristics of mental health promotion as well as variations across cultures. It also positions mental health promotion within the broader context of health promotion and public health. The evidence provided for the health and non-health interventions for mental health benefits is likely to be useful to health policy planners and public health professionals. The emphasis, however, is on the urgent need for a more systematic genera tion of evidence in the coming years, so that a stronger scientific base for further planning can be developed. Prevention of mental disorders and promotion of mental health are distinct but overlapping aims. Many of the interventions discussed in this report are also relevant for prevention. However, the scope as well as the target audience is considered much wider for mental health promotion. Dr Catherine Le Gales-Camus Assistant Direc to r-General Noncommunicable Diseases and Mental Health World Health Organization, Geneva Table of Contents Forewords Rosalynn Carter. Responding to the Social and Economic Determinants of Mental Health: A Conceptual Framework for Action. Community Development as a Strategy for Promoting Mental Health: Lessons from Rural India. The promotion of mental health is situated within the larger field of health promotion, and sits alongside the prevention of mental disorders and the treatment and rehabilitation of people with mental illnesses and disabilities. Like health promotion, mental health promotion involves actions that allow people to adopt and maintain healthy lifestyles and create living conditions and environments that support health. This book describes the concepts relating to promotion of mental health, the emerging evidence for effectiveness of interventions and the public health policy and practice implications. Many within and outside the fields of mental health and health promotion recognize a need to assemble, review and generate evidence about the tangible benefits of mental health promotion. This includes evidence on the relationship between social and cultural fac to rs and the mental health of individuals and communities. It documents how actions such as advocacy, policy and project development, legisla tive and regula to ry reform, communications, research and evaluation may be achieved and moni to red in countries at all stages of economic development. It considers strategies for continued growth of the evidence base and approaches to determining cost-effectiveness of actions. International cooperation and alliances will play a critical role in generating and applying the evidence by encou raging the social action required and moni to ring the impact on mental health of a range of policies and practices. Promoting Mental Health: Concepts, Emerging Evidence, Practice has been written for people working in health and non-health sec to rs whose decisions affect mental health in ways that they may not rea lize. It is also a sympathetic account for people in the mental health professions who need to endorse and assist the promotion of mental health while continuing to deliver services for people living with mental illnesses. It is relevant to people working to develop policies and programmes in countries with low, medium and high levels of income and resources, as well as those concerned with guideli nes for international action. It uses a public health framework to address the dilemma of competing priorities that concerns planners and practitioners in low income as well as affluent settings. Promoting Mental Health: Concepts, Emerging Evidence, Practice is the result of collaboration with scientific contribu to rs from sec to rs outside as well as within health. The edi to rs consulted a group of senior project advisers and contacted a wide group of interested people and organizations: profes sional, government, nongovernment and others. The aims of the project were to facilitate a better understanding of the evidence and approaches to gathering local evidence, activation of the scien tific community and growth in international cooperation and alliances. Part One introduces the to pic and describes a number of con cepts associated with health, health promotion and mental health, as well as their use across diffe rent cultures, countries and subpopulations. In Chapter 1, the introduction, we identify a new enthu siasm for mental health as a public health priority, and describe how international collaboration is crucial to stimulate much needed interest in mental health promotion. Since we consider mental health promotion as a subset of health promotion, this information is likely to be useful in our examination of the concept of mental health promotion. Chapter 3 discusses the concept of positive mental health and how our understanding of it has changed over time. The intrinsic value of mental health to individuals, families, communi ties and nations is discussed in Chapter 4, which also includes a discussion on the spiritual dimen sions of mental health. The concept of social capital has been of great interest to researchers across a number of disciplines in recent years, and the relationship between social capital and mental health is the focus of Chapter 6. Our view is that mental health is inextrica bly linked with human rights and these links are discussed in Chapter 7, which gives an overview of the international human rights framework and discusses some of the groups particularly vulnerable to human rights violations. Chapter 8 describes how a framework for mental health promotion can bring the concepts already discussed to gether to guide actions to address the determinants of men tal health. It begins with examining the nature of evidence in mental health promotion (Chapter 9) and then considers the available evidence in two specific areas – social determinants (Chapter 10) and the interface with physical health and illness (Chapter 11). Chapter 12 reviews the literature on indica to rs for mental health promotion and iden tifies their strengths and weaknesses. The next chapter (13) reviews the evidence on effectiveness of interventions using available information from the published literature. Since this evidence most often comes from high income developed countries, a separate chapter (14) focuses on evidence accumulating in developing countries where interventions are most urgently needed.
However erectile dysfunction drugs muse generic 30pills provestra free shipping, 80% of all rare disease patients are affected by approximately 350 rare diseases erectile dysfunction treated by order provestra 30pills without prescription. Paradoxically erectile dysfunction diagnosis order genuine provestra, though rare diseases are of low prevalence and individually rare erectile dysfunction kit purchase 30 pills provestra with amex, collectively they affect a considerable proportion of the population in any country, which according to generally accepted international research is – between 6% and 8%. Rare diseases include genetic diseases, rare cancers, infectious tropical diseases and degenerative diseases. However, the common considerations in the definitions are primarily, disease prevalence and to varying extent severity and existence of alternative therapeutic options. India must arrive at its own definition suited to its need, based on a careful consideration of prevalence, disease severity and study-ability. Rare Diseases as a public health issue in India the field of rare diseases is complex, heterogeneous, continuously evolving and suffers from a deficit of medical and scientific knowledge. Globally as well as in India, rare diseases pose a significant challenge to public health systems in terms of – difficulty in collecting epidemiological data, which in turn impedes arriving at burden of diseases and cost estimations, difficulty in research and development, making correct and timely diagnosis, complex tertiary level management involving long term care and rehabilitation and unavailability and prohibitive cost of treatment. Rare diseases constitute a significant economic burden independent of a country’s size and demographics, arising from increased healthcare spending. As resources are limited, 3 there is a macroeconomic allocation dilemma due to opportunity cost of funding rare disease treatment: on one hand, health problems of a much larger number of persons can be addressed by allocating a relatively smaller amount, on the other, much greater resources will be required for addressing health problems of a relatively smaller number of persons. Need for a Policy Rare diseases are, in most cases, serious, chronic, debilitating and life threatening illnesses, often requiring long-term and specialised treatments/management. In addition, they often result in some form of handicap, sometimes extremely severe. Moreover, they disproportionately impact children: 50% of new cases are in children and are responsible for 35% of deaths before the age of 1 year, 10% between the ages of 1 and 5 years and 12% between 5 and 15 years. As a result, parents of children suffering from rare diseases, whose treatment cost were not being covered by insurance or otherwise not being reimbursed, filed writ petitions in the Delhi High Court, seeking directions that the government provide the treatment for free. The National Health Policy 2017 also underscores the need for management of rare/orphan diseases. For the above reasons, a policy is necessary to devise a multipronged and multisec to ral approach to build India’s capacity to tackle rare diseases comprehensively, in areas of – epidemiological data for estimating burden, arriving at a definition and for cost estimation of treatment; research and development for treatment and diagnostic modalities, including through international/regional collaborations; training of health care providers; awareness generation; creating conducive environment for drug development and measures for ensuring affordability of treatment etc. The committees made several recommendations, which have been incorporated in this Policy. The Policy highlights the measures and steps, both in the short as well as in the long term, that need to be taken to deal comprehensively with rare diseases. However, recognizing the exorbitant cost of treatment for rare diseases, the policy seeks to strike a balance between access to treatment with health system sustainability. Immediate Measures • Constituting an Inter-ministerial Consultative Committee to coordinate and steer the initiatives of different ministries and departments on rare diseases as laid out in this Policy • Constituting a Technical cum Administrative Committee at Central as well as State levels, for management of corpus funds and developing technical guideline/criteria for which rare diseases to fund, to what extent, review of treatment etc. Long term measures: the below mentioned measures are of a continuing nature that ought to be initiated now with deliberate, concrete steps to wards their scale up and progressive realization • Put systems in place for reporting and data collection • Conduct epidemiological studies to estimate prevalence of rare diseases • Take measures to improve research and development for treatment, diagnostic modalities, care and support including assistive devices, drug development for rare diseases etc. A multi-sec to ral convergent approach to tackling rare diseases the Policy delineates the role of several ministries in achieving the measures envisaged. Each Ministry and concerned department(s) is required to develop an implementation framework on measures to be taken by them on their sec to r wise response to tackling rare diseases. A rare disease is a health condition of a particularly low prevalence that affects a small number of people compared with other prevalent diseases in the general population. There is no universally accepted definition of rare diseases and the definitions usually vary across different countries. However, the common considerations in the definitions are primarily, disease prevalence and to varying extent severity and existence of alternative therapeutic options (1). It is estimated that globally around 6000 to 8000 rare diseases exist with new rare diseases being reported in the medical literature regularly (2,3,4,5). However, 80% of all rare disease patients are affected by approximately 350 rare diseases (6). Paradoxically, though rare diseases are of low prevalence and individually rare, collectively they affect a considerable proportion of the population in any country, which according to generally accepted international research is – between 6% and 8% (7,8). Rare diseases include genetic diseases, rare cancers, infectious tropic diseases and degenerative diseases (9). However, different countries have their own definitions to suit their specific requirements and in context of their own population, health care system and resources. Japan identifies rare diseases as diseases with fewer than 50,000 prevalent cases (0. Since there is no epidemiological data, there are no figures on burden of rare diseases and morbidity and mortality associated with them. If we apply the international estimate of 6% to 8% of population being affected by rare diseases, to India, we have between 72 to 96 million people affected by rare diseases in the country, which is a significant number. However, this is at best a general estimate (10) and India will need to arrive at its own estimate and definition of rare diseases, derived chiefly from prevalence data, which is currently lacking. So far only about 450 rare diseases have been recorded in India from tertiary care hospitals (10). The most common rare diseases include Haemophilia, Thalassemia, Sickle-cell Anaemia and Primary Immuno Deficiency in children, au to -immune diseases, Lysosomal s to rage disorders such as Pompe disease, Hirschsprung disease, Gaucher’s disease, Cystic Fibrosis, Hemangiomas and certain forms of muscular dystrophies. Rare Diseases as a public health issue the field of rare diseases is complex and heterogeneous and suffers from a deficit of medical and scientific knowledge. The landscape of rare diseases is constantly evolving as there are new rare diseases and conditions being identified and reported regularly in medical literature. Apart from a few rare diseases, where significant progress has been made, the field is still at a nascent stage. For a long time, doc to rs, researchers and policy makers were unaware of rare diseases and until very recently there was no real research or public health policy concerning issues related to the field. This poses formidable challenges in development of a comprehensive policy on rare diseases. Nevertheless, it is important to take steps, in the short as well as long term, with the objective of tackling rare diseases in a holistic and comprehensive manner. The lack of epidemiological data on incidence and prevalence of rare diseases impedes understanding of the extent of the burden of rare diseases and development of a definition. It also hampers efforts to arrive at correct estimation of the number of persons suffering from these diseases and describe their associated morbidity and mortality. In such a scenario, the economic burden of most rare diseases is unknown and cannot be adequately estimated from the existing data sets (12). Although extremely challenging, considering the complexity of various diseases and the difficulty in diagnosis, there is a clear need to undertake systematic epidemiological studies to ascertain the number of people suffering from rare diseases in India. According to a study which reviewed and analysed definitions across jurisdictions, most definitions, as discussed above, appear to consider disease 10 prevalence, but other criteria also apply sometimes, such as disease severity, whether the disease is life-threatening, whether there are alternative treatment options available, and whether it is heritable (1). The study found that relatively few definitions (30%) included qualifiers relating to disease severity and/or a lack of existing treatments, whereas most definitions (58%) included a prevalence threshold. The average prevalence thresholds used to define rare diseases ranged among different jurisdictions from 5 to 76 cases/100,000 people, with a global average prevalence threshold of 40 cases/ 100,000 people. The study concluded that attempts at harmonising the differing definitions, should focus on standardizing objective criteria such as prevalence thresholds and avoid qualitative descrip to rs like severity of the disease. However, it has been contested that disease prevalence alone may also not be an accurate basis for defining rare diseases, as it does not take in to account changes in population over time. Hence, some have suggested that a more reliable approach to arriving at a definition could be based on the fac to rs of – a) location a disease which is uncommon in one country may be quite common in other parts of the world; b) levels of rarity some diseases may be much more rare than other diseases which are also uncommon; and c) study-ability whether the prevalence of a disease lends itself to clinical trials and studies (13). This underscores the need for further research to better understand the extent of the existing diversity of definitions for rare diseases and to examine the scope of arriving at a definition which is best suited to conditions in India. For many rare diseases, no diagnostic method exists, or diagnostic facilities are unavailable (14). As a result, physicians must often 11 provide their best guess on which genes to investigate. If the test is negative, further testing will be required, which is an expensive and time consuming process. There is a lack of awareness about rare diseases in general public as well as in the medical profession. Many doc to rs lack appropriate training and awareness to be able to correctly and timely diagnose and treat these conditions (15). In addition, two to three misdiagnoses are typical before arriving at a final diagnosis (16). Delay in diagnosis or a wrong diagnosis increases the suffering of the patients exponentially. There is an immediate need to create awareness among general public, patients and their families and doc to rs, training of doc to rs for better diagnosis, standardisation of diagnostic modalities, developing of new diagnostic to ols and investment in gene therapy.
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