World Rare Disease Day 2015 : Living with a Rare Disease - Day-by-day, hand-in-hand

World Rare Disease Day 2015

World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families.

The 8th annual World Rare Disease Day will be held on Saturday, February 28, 2015. On this day, various activities are taking place all over the world

THEME

The Rare Disease Day 2015 : Living with a Rare Disease - Day-by-day, hand-in-hand

The Rare Disease Day 2015 theme Living with a Rare Disease pays tribute to the patients, families and caregivers who are impacted by rare diseases. The slogan Day-by-day, hand-in-hand evokes the solidarity between families, patient organisations and communities. 28 February 2015 marks the eighth Rare Disease Day .

The complex nature of most rare diseases, coupled with limited access to treatment and services, mean that family members are often the primary source of solidarity, support and care for people with rare diseases. Patient organisations can provide information, experience, resources and support for people Living with a Rare Disease.

Day-by-day, hand-in-hand, patients, families and organisations are joining forces to find common solutions, advocating for treatments, care, resources and services in solidarity with all stakeholders - caregivers, healthcare professionals, specialised social services, researchers, pharmaceutical companies, policy makers, and regulatory bodies.

For Rare Disease Day 2015 let's raise awareness for the daily challenges of Living with a Rare Disease.

First Rare Disease Day was held in 2008.

This Rare Disease Day, raise and join hands for people Living with a rare disease. Day-by-day, hand-in-hand we can make a difference!

MCI INSPECTION KAPVGMC TRICHY

MCI team revisits med college to oversee progress

TRICHY: Members of the Medical Council of India (MCI) made a surprise visit to KAP Viswanatham Government Medical College (KAPVGMC) attached to Mahatma Gandhi Memorial Government Hospital (MGMGH) here on Thursday, to decide whether the college should continue having 50 additional MBBS seats.

The team, comprising Dr T S Renganath, Dr K Sivasankara Rao and Dr Thathiri Parmar, inspected the wards in MGMGH and the hostels, canteen and classrooms in KAPVGMC. The whole visit was videographed and photographed.

The state government had raised MBBS seats in KAPVGMC from 100 to 150 in 2013-14, but since then, it has been struggling to meet the MCI requirements for conducting MBBS course with 150 seats. The latest visit follows two earlier visits in May and November, 2014. In November, the MCI team had made adverse remarks about the facilities and manpower available at the college for conducting MBBS classes with 150 seats, hospital sources said. The recognition for additional seats had been pending ever since and Thursday's visit is considered crucial.

The team checked whether some of the discrepancies pointed out to the hospital authorities by the council during the last visit had been rectified.

Shortage of doctors remains one of the serious problems faced by the college and the hospital, a situation that has remained unchanged for several years now. The teams from MCI reportedly pointed out the shortage and advised the government to increase the number of faculty. In the wake of pending approvals for many medical colleges across the state, the ministry of health family welfare of Tamil Nadu had announced the appointment of new doctors. KAPVGMC was sanctioned 57 doctors, besides 27 associate professors, 17 assistant professors and 19 tutors on a permanent basis, at an approximate cost of Rs 2.98 crore per annum. However, only a few of these posts have been filled so far. Hospital staff said many qualified doctors were not interested to join government hospitals due to the workload.

At the time of the earlier visit by MCI members, TOI had reported about doctors being allegedly hired temporarily from primary health centres and government hospitals to show that the college had enough manpower.

Dr Parmar told TOI that the visit was a routine procedure for approval and accreditation of courses. However, when asked if the college satisfied the required norms, including number of faculty, she refused to comment.

Neuropsychiatry of “Selfies”

Photopenia

At the turn of the 21st century, millions of individuals became obsessed with taking pictures of themselves and sharing them with friends as well as untold numbers of strangers. It suddenly became socially acceptable to take innumerable pictures of oneself. These self-portraits, more or less spontaneous, taken with a cellphone or handheld digital camera, became known as “selfies.” 


Graven images were originally reserved for important subjects, like gods. Later, wealthy individuals and others of high social status posed for commissioned painted portraits. With the advent of film photography, framed portraits of family and friends were exhibited sparingly in homes and workplaces. While it had previously been considered egotistical to take a picture of oneself, the invention of inexpensive digital photography, virtually unlimited digital storage, smartphones with cameras, front facing lenses, and popular free Internet online sharing communities such as Facebook coalesced into the perfect storm to facilitate the proliferation of selfies. Even a "selfie stick" has been invented to extend the reach of one's arm and increase photographic possibilities

The popularity of the selfie remains a mystery. It may be related to the fleeting narcissistic pleasure of seeing yet another image of oneself. However, many people hardly look at the selfies they have taken, sometimes merely casting a glance to insure that the picture is in focus. Perhaps there is pleasure in the mere act of taking the picture? Since selfies are often immediately posted online, perhaps it is the joy of sharing that induces and reinforces this unsubstantive, repetitive behavior? The taking of a selfie may also relieve existential angst regarding one’s very existence as a cogito ergo sum argument, i.e., “I took a selfie, therefore I am.”

The lack of a clear justification for the time and energy devoted to selfies raises the possibility that they represent the manifestation of a new psychiatric disorder, “psychogenic photopenia (PP).” Psychogenic photopenia is defined as the widespread delusion that the world contains an insufficient number of photographs of oneself. 



While people take selfies all over the world, Makati City in the Philippines has the highest prevalence of selfie-takers, 258/100,000 people. New York City is #2, with 202 selfie-takers per 100,000. Selfies have become so socially important that there are detailed  “how to” sites with instructions. Nonetheless, one such site candidly admits, “but taking a random photo of yourself with your phone is a silly enough action in itself.” Whether the propagation of selfies will overwhelm data storage capabilities resulting in a catastrophic crash of the "cloud" remains one of the most contentious questions of modern times.

Young adults, particularly women, appear particularly susceptible to PP. However, with increasing age, selfies of men become more prevalent. President Obama has toyed with selfies. It appears that no one is immune .


Causes

Psychogenic photopenia may be a symptom of narcissistic personality disorder. In a recent online survey of 1,000 men aged 18-40, narcissism and psychopathy personality traits predicted an increased number of selfies . Another possibility is that PP represents a subtype of obsessive compulsive disorder. For example, if an affected individual is prevented from taking a selfie, they may experience severe anxiety, which is only relieved with the press of a shutter button. The rapid geographic spread of selfies hints at a contagious phenomenon, perhaps of viral origin. Psychogenic photopenia might also be a subtype of mass hysteria.

Treatment

As with many neuropsychiatric conditions, definitive treatment of PP has lagged behind descriptive semiology. At present, there is no known cure. The most pragmatic approach to the ever present temptation to take a selfie may perhaps be found in the writings of Oscar Wilde, “The only way to get rid of a temptation is to yield to it.” 


Psychogenic photopenia is the false belief that insufficient pictures of oneself exist in the universe. This condition has led to an epidemic of “selfies,” particularly among young women living in major cities such as Manila and New York. Multiple etiologies may be responsible, such as narcissistic personality disorder, obsessive compulsive disorder, infectious disease, mass hysteria, existential self-doubt, or other as yet unidentified causes. There is no proven treatment. On the other hand, the widespread prevalence of PP amongst the general population suggests that taking selfies may represent normal evolutionary human behavior in the 21st century

To Mark The First International Epilepsy Day 2015 An Aricle In the No 1 Daily English News Paper THE HINDU from India




THE HINDU

Sunday Magazine

February 15, 2015

Updated: February 14, 2015 15:55 IST

DOC TALK

Medication is the answer


Dr. M. A. ALEEM



In light of the first International Epilepsy Day on February 9, it is crucial to bust some myths about the neurological disorder.

TOPICS

medical specialisation

neurology

health

For six years, 24-year-old Manju* had been suffering from seizures. Her family had taken her to a traditional healer, who said she was possessed by a demon. She was given a metal ring to keep the demon away. When this did not stop the seizures, she was taken to another magician who tied a ‘holy thread’ around her wrists and neck. The seizures continued unabated.

Finally, on the advice of a neighbour, Manju was taken to a doctor who referred her to a neurologist. After consultations and tests, Manju was diagnosed with epilepsy. Once she began the prescribed medication, the seizures were controlled. Manju is now happily married and the mother of two children.

This case illustrates how epilepsy is seen in India. Epilepsy is the name for a group of brain disorders characterised by fits that occur when recurrent episodes of brain dysfunction, with simultaneous discharge of brain cell, lead to alteration in motor or sensory activity.

Epilepsy has many causes. In some cases, the condition is inherited; but it is mostly caused by brain damage due to infection, trauma, stroke, tumour or developmental abnormalities. Often the cause remains unknown. Unfortunately, given the fear and misunderstanding surrounding this disease, patients often face social stigma and discrimination. Here are a few myths and facts about epilepsy.

Myth: Epilepsy is the result of possession by evil spirits. The treatment is to exorcise such spirits through faith healers or alternative therapies.

Reality: Epilepsy is a neurological disorder that is treated with medication. The patients should be taken to a qualified doctor.

Myth: An epileptic attack can be stopped by making the patient smell an onion or branding the skin with a hot needle or iron rod.

Reality: Such methods only cause more injury and do not help the patient.

Myth: If you touch an epileptic patient during a seizure, the disorder will pass to you.

Reality: Epilepsy is not contagious and does not spread by touch.

Myth: Epilepsy brings stigma to the family, so the patient should be hidden.

Reality: Epilepsy is a treatable disease just like diabetes or hypertension. There is no reason to hide an epileptic patient. Ensure that they get timely treatment and that they take their medication regularly.

Myth: Epilepsy is a form of madness and the patient needs to be admitted in an asylum.

Reality: Epilepsy is the disorder of brain function. So it should be treated by a neurologist.

Myth: People with epilepsy cannot marry nor have children.

Reality: As long as the patient takes his/her medication and does not hide the condition, there is no reason why he/she cannot marry or have children.

Myth: Children who have seizures should not be sent to school.

Reality: Most children who have epilepsy are intelligent. In some cases, there may be some co-existent retardation but that is due to an abnormality in the brain. Again, as long as the child takes the medication regularly, he/she can go to school.

Myth: Wearing a metal ring, talisman or offering animal sacrifices will prevent seizures.

Reality: Nothing can prevent seizures except antiepileptic medication.

Despite various efforts across the world to create awareness about epilepsy, a lot of misinformation still persists. This prevents patients from seeking proper medical treatment. We need more awareness programmes that will reiterate that epilepsy is a disease like any other and that people with epilepsy are no different from others.

(* name changed)

Dr. M.A. Aleem is a consultant Neurologist and Epileptologist based in Tiruchi.

Keywords: International Epilepsy Day, neurological disorders



Time to deliver patient centred care- Aleem MA Rapid Response BMJ⁠ 2015;350:h530

Editorial

Spotlight: Patient Centred Care

Time to deliver patient centred care

BMJ⁠ 2015⁠; 350⁠ doi: http://dx.doi.org/10.1136/bmj.h530 (Published 10 February 2015)⁠

Cite this as: BMJ⁠ 2015;350:h530



Re: Time to deliver patient centred care

Medical care primarily should focus on patients, secondarily on family, and the tertiary care must be targeted on the community. Lack of patient centred care will not achieve health care goals in a country.

Competing interests: No competing interests

12 February 2015

MA Aleem

Neurologist

ABC Hospital

Annamalai Nagar Trichy 620018 Tamilnadu India

First International Epilepsy day 9.2.2015.

1st International Epilepsy day 9.2.2015.

VALNTINE AND EPILEPSY

Dr.M.A.Aleem M.D.D.M. (Neuro) Former of Vice Principal HOD & Professor of Neurology KAPV Government Medical College & MGM Government Hospital Consultant neurologist and Epileptologist (Trained at Institution of Neurology Queen,s Square. London.UK.) ABC Hospital, Trichy - 620018 President Trichy Neuro Association drmaaleem@hotmail.comCell.94431-59940

Huge efforts have developed over the past decade in different parts of the world to bring awareness about epilepsy to the public domain. Epilepsy still remains the “black sheep” among neurologic diseases. Even in the modern context, people in many parts of the world continue to perpetuate many myths and misconceptions about epilepsy. This may be due in part to the ancient nature of epilepsy, with the association of being possessed by imagined demons and spirits. This leads to persistent restrictions in different cultures that stigmatize people with epilepsy over many generations. These often prevent people with epilepsy from seeking proper medical treatment.

However, an important way to bring epilepsy out of the shadows and educate the public about modern concepts that epilepsy is a disease like any other is through awareness. This means taking the opportunity to showcase that people with epilepsy are not much different than anybody else. In fact, most people with epilepsy are successfully treated so that they can lead essentially near normal lives, get married, have children, and participate in modern social and family life.

As a neurologist and as a professor of neurology dealing with rural patients with epilepsy in India, it was Dr.M.A.Aleem who mooted the idea in 2003 for a world Epilepsy Day (WED) for epilepsy.Last year Dr.M.A.Aleem worte to the International League Against Epilepsy (ILAE) which not only published the request in Epilepsia but it was also favorably considered by ILAE and International Bureau for Epilepsy[IBE] .
To overcome this problem, three leading international organizations working in epilepsy – World Health Organization (WHO), International League Against Epilepsy (ILAE), and International Bureau for Epilepsy (IBE) – launched the “Global campaign Against Epilepsy (GCAE)” in 1997 to bring epilepsy, epilepsy patients, their family, and community “out of the shadow.” There are already examples of epilepsy awareness days in different parts of the world. For example, in India our epilepsy day has been observed on November 17 every year. As Dr.Aleem mentions, since June 29, 1997 the three – way partnership of the ILAE, the IBE, and World Health Organization (WHO) has been involved in the high profile ILAE/IBE/WHO Global Campaign against Epilepsy “Out of the Shadows” initiative.

More recently, in February 2011, European Epilepsy day was introduced, and this has been very successfully celebrated each year since then, by both IBE and ILAE, with activities in the European Parliament in Brussels and Strasbourg, by IBE member associations and ILAE chapters, and by epilepsy centers, schools, and groups across Europe. It has also been a long – held desire of both IBE and ILAM to establish an international day for such an event have proved to be difficult for a number of reasons. For instance, unfortunately, with a decision made by WHO a few years ago not to introduce any further World Health days this was no longer an option. Was the second problem, which proved to be the biggest obstacle, was the selection of a suitable, globally agreeable date. For instance governments to the need for improved services and legislation, the event should take place when parliaments are in session, and the need was felt to avoid overlap with other major world days in order to maximized exposure.

The decision was made therefore to reopen discussion, following which a different date was identified and approved by a majority vote of both IBE and ILAE committees. This new date is the second Monday in February and is suitable for a number of reasons including that it does not clash with festivals and religious events and is neither mid – winter nor mid – summer. The date lies closed to the celebration of Valentine’s Day, a day that is celebrated around the world. It is a commonly held belief that Valentine had epilepsy.
Now that a date has finally been decided and rubberstamped, it is but expected that international Epilepsy Day will grow to be an important annual event to raise the profile of epilepsy around the world. Between now and the February 9, 2015, ILAE and IBE will be working on plans for the launch of the 1st International Epilepsy Day. With both organizations in official working relations with WHO, and with IBE, having Special Consultative Status on the Economic and Social Council of the United Nations (ECOSOC), our organizations can bring a high level of distinction and prestige to the celebration of an international day for epilepsy when we will highlight at international, regional, and national levels, the huge problem still faced by the estimated 60 million people living with epilepsy today worldwide.

By proclaiming a world Epilepsy Day (February 9) it is also useful to plan action regarding the incidence, prevalence, economic burden, treatment gap, and above all the stigma of epilepsy in all parts of the world. For instance, each year we can adopt a central theme for the world epilepsy day. This can include topics like epilepsy and women, epilepsy in elderly, epilepsy in transgender, epilepsy in children, and epilepsy in adolescents. We trust that all interested stakeholders will join with us in the launch and celebration of International Epilepsy Day (Feb 9) in 2015. Together we can make a difference.

Tobacco use is the most important risk factor for cancer

World Cancer Day 2015

4th February 2015


Wold Cancer Day is celebrated to promote awareness about the fight against cancer and educate people suffering from its pain that it is a curable disease. Prevention, early detection, treatment and care open up to the exciting prospect that we can impact the global cancer burden - for the better.:
• About 30% of cancer deaths is due to the five leading behavioral and dietary risks: high body mass index, low fruit and vegetable intake, physical inactivity, tobacco use, alcohol use and is therefore preventable.• Tobacco use is the most important risk factor for cancer causing over 20% of global cancer deaths and about 70% of global lung cancer deaths.• More than 60% of world's total new annual cases occur in Africa, Asia and Central and South America. These regions account for 70% of the world's cancer deaths.• Cancers figure among the leading causes of death worldwide, accounting for 8.2 million deaths in 2012.• It is expected that annual cancer cases will rise from 14 million in 2012 to 22 within the next two decades