27th February: Rare Disease Day
Observe 27th February as Rare Disease day and create awareness about the subject.
Some background material is enclosed.
Dr A M Pillai and DR K K Aggarwal
27th February: Rare Disease Day
Rare Diseases day Is observed on 27th February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families.
It was established in 2008 because, according to the European Organization for Rare Diseases (EURORDIS), treatment for many rare diseases is insufficient, as are the social networks to support individuals with rare diseases and their families.
In 2009 Rare Disease Day went global as NORD (National Organization for Rare Disorders) mobilized 200 rare disease patient advocacy organizations.
Some Court Judgments
- IN THE HIGH COURT OF DELHI AT NEW DELHI, W.P.(C) 7279/2013
- "....on account of lack of Government planning, there is ‘pricing out’ of orphan drugs for rare and chronic diseases, like Gaucher. The enzyme replacement therapy is so expensive that there is a breach of constitutional obligation of the Government to provide medical aid on fair, reasonable, equitable and affordable basis. By their inaction, the Central and the State Governments have violated Articles 14 and 21 of the Constitution.
- "... Just because someone is poor, the State cannot allow him to die. In fact, Government is bound to ensure that poor and vulnerable sections of society have access to treatment for rare and chronic diseases........"
- ".............After all, health is not a luxury and should not be the sole possession of a privileged few."
- IN THE SUPREME COURT OF INDIA CIVIL APPELLATE JURISDICTION CIVIL APPEAL NO.2867 OF 2012 "Finally, we hope and believe that the institutions and individuals providing medical services to the public at large educate and update themselves about any new medical discipline and rare diseases so as to avoid tragedies such as the instant case where a valuable life could have been saved with a little more awareness and wisdom from the part of the doctors and the Hospital. "
- Delhi High Court "New Delhi: In a significant development for the right to health in India, Justice Manmohan of the Delhi High Court took serious note of the limited availability of affordable treatment for persons with neglected diseases like Haemophillia and ensured that the State Government provide treatment free of cost, as part of its obligation under Article 21 of the Constitution of India."
IMA has asked the government to fix budget for the care of rare diseases.
Rare Diseases (Some may not be rare in India)
Acrocephalosyndactylia, Acrodermatitis, Addison Disease, Adie Syndrome, Alagille Syndrome, Amylose, Amyotrophic Lateral Sclerosis, Angelman Syndrome, Angiolymphoid Hyperplasia with Eosinophilia, Arnold-Chiari Malformation, Arthritis, Juvenile Rheumatoid, Asperger Syndrome, Bardet-Biedl Syndrome, Barrett Esophagus, Beckwith-Wiedemann Syndrome, Behcet Syndrome, Bloom Syndrome, Bowen's Disease, Brachial Plexus Neuropathies, Brown-Sequard Syndrome, Budd-Chiari Syndrome, Burkitt Lymphoma, Carcinoma 256, Walker, Caroli Disease, Charcot-Marie-Tooth Disease, Chediak-Higashi Syndrome, Chiari-Frommel Syndrome, Chondrodysplasia Punctata, Colonic Pseudo-Obstruction, Colorectal Neoplasms, Hereditary Nonpolyposis, Craniofacial Dysostosis, Creutzfeldt-Jakob Syndrome, Crohn Disease, Cushing Syndrome, Cystic Fibrosis, Dandy-Walker Syndrome, De Lange Syndrome, Dementia, Vascular Dermatitis Herpetiformis, DiGeorge Syndrome, Diffuse Cerebral Sclerosis of Schilder, Duane Retraction Syndrome, Dupuytren Contracture, Ebstein Anomaly, Eisenmenger Complex, Ellis-Van Creveld Syndrome, Encephalitis, Enchondromatosis, Epidermal Necrolysis, Toxic, Facial Hemiatrophy, Factor XII Deficiency, Fanconi Anemia, Felty's Syndrome Fibrous Dysplasia, Polyostotic, Fox-Fordyce Disease, Friedreich Ataxia, Fusobacterium, Gardner Syndrome, Gaucher Disease, Gerstmann Syndrome Giant Lymph Node Hyperplasia, Glycogen Storage Disease Type I, Glycogen Storage Disease Type II,Glycogen Storage Disease Type IV, Glycogen Storage Disease Type V, Glycogen Storage Disease Type VII, Goldenhar Syndrome Guillain-Barre Syndrome, Hallermann's Syndrome, Hamartoma Syndrome, Multiple Hartnup Disease, Hepatolenticular Degeneration, Hepatolenticular Degeneration, Hereditary Sensory and Motor Neuropathy, Hirschsprung Disease, Histiocytic Necrotizing Lymphadenitis, Histiocytosis, Langerhans-Cell, Hodgkin Disease, Horner Syndrome, Huntington Disease, Hyperaldosteronism, Hyperostosis, Diffuse Idiopathic Skeletal, Hypopituitarism, Inappropriate ADH Syndrome, Intestinal Polyps, Isaacs Syndrome, Kartagener Syndrome, Kearns-Sayre Syndrome, Klippel-Feil Syndrome, Klippel-Trenaunay-Weber Syndrome, Kluver-Bucy Syndrome, Korsakoff Syndrome, Lafora Disease, Lambert-Eaton Myasthenic Syndrome, Landau-Kleffner Syndrome, Langer-Giedion Syndrome, Leigh Disease, Lesch-Nyhan Syndrome, Leukodystrophy, Globoid Cell, Li-Fraumeni Syndrome, Long QT Syndrome, Machado-Joseph Disease, Mallory-Weiss Syndrome, Marek Disease, Marfan Syndrome, Meckel Diverticulum, Meige Syndrome, Melkersson-Rosenthal Syndrome, Meniere Disease, Mikulicz' Disease, Miller Fisher Syndrome, Mobius Syndrome, Moyamoya Disease, Mucocutaneous Lymph Node Syndrome, Mucopolysaccharidosis I,Mucopolysaccharidosis II, Mucopolysaccharidosis III, Mucopolysaccharidosis IV, Mucopolysaccharidosis VI, Multiple Endocrine Neoplasia Type 1, Munchausen Syndrome by Proxy, Muscular Atrophy, Spinal, Neuroaxonal Dystrophies, Neuromyelitis Optica, Neuronal Ceroid-Lipofuscinoses, Niemann-Pick Diseases, Noonan Syndrome, Optic Atrophies, Hereditary, Osteitis Deformans, Osteochondritis, Osteochondrodysplasias, Osteolysis, Essential Paget Disease, Extramammary Paget's Disease, Mammary Panniculitis, Nodular Nonsuppurative Papillon-Lefevre Disease, Paralysis, Pelizaeus-Merzbacher Disease, Pemphigus, Benign Familial, Penile Induration, Pericarditis, Constrictive, Peroxisomal Disorders, Peutz-Jeghers Syndrome, Pick Disease of the Brain, Pierre Robin Syndrome, Pigmentation Disorders, Pityriasis Lichenoides Polycystic Ovary Syndrome, Polyendocrinopathies, Autoimmune, Prader-Willi Syndrome, Pupil Disorders, Rett Syndrome, Reye Syndrome, Rubinstein-Taybi Syndrome, Sandhoff Disease, Sarcoma, Ewing's,Schnitzler Syndrome,Sjogren's Syndrome, Sjogren-Larsson Syndrome, Smith-Lemli-Opitz Syndrome,Spinal Muscular Atrophies of Childhood, Sturge-Weber Syndrome, Sweating, Gustatory Takayasu Arteritis, Tangier Disease, Tay-Sachs Disease, Thromboangiitis Obliterans Thyroiditis, Autoimmune Tietze's Syndrome, Togaviridae Infections,Tolosa-Hunt Syndrome, Tourette Syndrome, Uveomeningoencephalitic Syndrome, Waardenburg's Syndrome, Wegener Granulomatosis, Weil Disease, Werner Syndrome, Williams Syndrome, Wilms Tumor, Wolff-Parkinson-White Syndrome, Wolfram Syndrome, Wolman Disease, Zellweger Syndrome, Zollinger-Ellison Syndrome, von Willebrand Diseases
UNICEF and Indian Medical Association partner against Child Sexual Abuse (CSA) Launches 10-key action points about CSA, for medical practitioners
News Around the Globe
- In patients with acute respiratory distress syndrome (ARDS) who are on ventilators, driving pressure (ΔP) may help predict survival, reported a study published in the New England Journal of Medicine.
- An expert panel has released its new recommendations to the US government for healthy eating that include advice on the consumption of fruit, vegetables, whole grains, low- or nonfat dairy, seafood, legumes, and nuts and limiting the consumption of red and processed meat, added sugars, and refined grains. The recommendations give a green light to a moderate amount of caffeine consumption and suggest that controlling the amount of dietary cholesterol may not be required.
- A new risk score for amputation in patients with infected diabetic foot ulcers has been developed that could be used easily in daily practice. The score may have better prognostic accuracy than the current International Working Group on the Diabetic Foot (IWGDF) classification system. The report is published in Diabetes Care.
- Oral octreotide appears to be safe and effective in treating acromegaly in patients switched from parenteral therapy, suggests a multinational group of researchers. The findings are published online in The Journal of Clinical Endocrinology & Metabolism.
- In patients with active inflammatory bowel disease (IBD), tissue TNF levels that exceed anti-TNF levels may account for inadequate treatment responses, suggests new research published online in Gut.
Dr KK Spiritual Blog
Negative Thoughts Are Absence Of Positive Thoughts
Darkness cannot be removed physically; it can only be removed by switching light or going into sunlight or lighting fire. Similarly negative thoughts are absence of positive thoughts.
In Bhagavad Gita also it has been said that the period of Uttarayana with longer days, the first half at full moon, in the presence of light or agni, one acquires more positive thoughts as compared in Dakshinayana before Amavasya or no moon or in absence of light.
Bhagavad Gita also says that whatever you think the whole life, you think at the time of death and if the time at the time of death you have positive thoughts, you are likely to get Moksha. That may be the reason why in Hindu mythology it is said that just before the death, we should light a diya or chant in front of agni (fire) so that dying person’s thoughts become positive.
In computer language, it is explained that when you open a file repeatedly, it becomes a priority file and comes in search engine on priority as compared to other files.
- Patients receiving antithrombotic therapy following an MI who take a nonsteroidal anti-inflammatory drug (NSAID) are at an increased risk of bleeding and an increased risk of cardiovascular death, nonfatal recurrent MI, and stroke, suggests a new Danish observational study published in the February 24 issue of the Journal of the American Medical Association.
- A new study published in JAMA Internal Medicine suggests that sauna bathing may reduce the risk of cardiovascular and all-cause mortality.
- Washing dishes by hand, rather than in a dishwasher, may help prevent allergies in children, points a new Swedish study. The study also suggests that consuming fermented or farm-bought food could decrease the likelihood of allergies further. The study is published online in Pediatrics.
- Babies who are breastfed have lower arsenic exposure than babies who are fed formula, suggests a new study published February 23 in the journal Environmental Health Perspectives
Situation:A patient died after receiving penicillin injection.
Reaction: Oh my God! Why was anaphylaxis not suspected?
Lesson: Make sure that each time a patient is given penicillin injection, anti anaphylaxis measures are available.
(Contributed by Dr MC Gupta, Advocate)
Is a gynecologist, who has undergone USG training at a FOGSI accredited center, legally competent to perform USG at her clinic for infertility treatment?
- In terms of Rule 3 (3) (1) (b) of the PC & PNDT Rules, 1996, the person performing the US examination should be "A sonologist, Imaging specialist, Radiologist, or Registered Medical Practitioner having postgraduate degree or diploma or six months training or one year experience in sonography or image scanning".
- As per MCI, "Ultrasonography can be undertaken by a specialist who possesses postgraduate qualification in the specialty of Radio–Diagnosis. However, specialist doctor in their speciality can also undertake Ultrasonography for the purpose of certification subject to the condition that he/she has undergone orientation training in the ultrasonography in the department of Radio–diagnosis in a recognized medical institution under recognized medical teacher for a minimum period of 6 months wherein he has not only observed the procedure of Ultrasonography but also has undergone hands on training to enable him to practice in the field of Ultrasonography for the diagnostic purposes pertaining to his/her speciality." (MCI Executive Committee dated 27.4.2009).
- The combined effect of the two provisions above is as follows:
a. "A postgraduate qualification in radiology" entitles one to perform sonography both for the purpose of the PNDT Act or otherwise. (Note - With regard to the preamble of the PNDT Act, performing USG for the purpose of the PNDT Act would mean performing USG in women in relation to conception).
b. "Six months training or one year experience in sonography or image scanning" entitles one to perform sonography for the purpose of the PNDT Act.
c. "Orientation training in ultrasonography in the department of Radio-diagnosis in a recognized medical institution under recognized medical teacher for a minimum period of 6 months (wherein he has not only observed the procedure of Ultrasonography but also has undergone hands on training to enable him to practice in the field of Ultrasonography for the diagnostic purposes pertaining to his/her speciality)" entitles a specialist to undertake Ultrasonography for the purpose of certification related to the specialty.
- In view of the foregoing, a gynecologist performing USG in relation to infertility would be deemed to do so in relation to conception. Her case would be covered by ‘b’ above. She would be legally competent for performing USG if her USG training at a FOGSI accredited centre was for a period of six months.
Dr Good Dr Bad
Situation: A patient with Chikungunya was found to have high ESR.
Dr. Bad: It may not be Chikungunya.
Dr. Good: It is Chikungunya.
Lesson: High ESR is seen in Chikungunya.
IJCP Book of Medical Records
Twitter of the Day
Dr KK Aggarwal: High BP in Pregnancy Increases Risk for Future Atherosclerosis http://youtu.be/NMIK16PyBrY?a via @YouTube
Dr Deepak Chopra: Awareness exists at the core of all material objects from atoms to galaxies http://bit.ly/DC_Ananda #ananda
Total CPR since 1st November 2012 – 101090 trained
Rabies News (Dr A K Gupta)
What does humanizing your dog means?
- Talking to your dog like he/she is a person.
- Treating your dog like he/she is a person.
- Allowing dogs to do what they want because it will hurt their "feelings."
- Dressing them up in little doggie clothes.
Remember, humanizing your dog is fulfilling your own human needs, not your dogs. Humanizing dogs does more harm than good.
Video of the Day
Sameer Malik Heart Care Foundation Fund
The Annual Meeting of Tropical Neurology Subsection of Indian Academy of Neurology (TROPICON 2015) is being held at India Habitat Center, Silver Oak Hall, New Delhi from 11-12 April 2015. The Scientific Program promises an exciting discussion and interchange of views based on the theme "Infection & Immunity: A Tropical Tempest of Challenges". The scientific program is attached. The web site is TROPICON2015.COM which gives further details.
Since the topics include common neurological ailments which most physicians see every day, IMA will be sending 100 doctors to attend the conference. They will not have to pay any registration fee.
For registration one may contact Dr.Padma Srivastava Professor, Head Unit III Neurology AIIMS, New Delhi @ email@example.com.
With Kind regards
Dr K K Aggarwal
A Message by a Woman
Someone asked me "Are you a working woman or a housewife?
I said: Yes I am a full time working Housewife. I work 24 hours a day I am a Mom, a Wife, Daughter and a Daughter–in–Law.
I am an alarm clock, Cook, Maid, Teacher, Waiter, Nanny, Nurse, Handyman, Security officer, Counselor and a Comforter. I don’t get Holidays, sick leave or days off; I work through Day and Night.
I am on call all hours and get paid with a sentence "What you do all day at home"
Choose to become a father before you are 40
Men should think about becoming fathers much before 40 years in order to minimize the effects of age on fertility and outcomes of pregnancy. The ideal age to become a father is between 25–35 years.
The age of sperm donors as per recommendations should be less than 40 years of age. Beyond this age, the sperm quality is reduced considerably and this may adversely affect fertility and pregnancy outcomes.
Researchers from the French National Institute for Medical Research has reported that miscarriages rates were higher in women whose partners were older than 40 years when compared to women whose partners are young men. This risk doubled when their partners were 45 years of age.
Older fathers are more likely to have a child with schizophrenia, heart defects, cleft lip, Down syndrome or a child being born autistic are higher if the age of the father is more than 40.
In women, pregnancy after 35 years of age is generally regarded as high risk with greater chances of birth defects and miscarriages. But, according to the researchers, the age of the male should also be taken into consideration by gynecologists.
Quote of the Day
Success usually comes to those who are too busy to be looking for it. Henry David Thoreau
IMA in Social Media
https://www.facebook.com/ima.national 28139 likes
https://www.facebook.com/imsaindia 46202 likes
https://www.facebook.com/imayoungdoctorswing 805 likes
Twitter @IndianMedAssn 800 followers
Yesterday’s Mind Teaser: Strong correlation with colorectal cancer is seen in:
1. Peutz-Jegher's polyp.
2. Familial polyposis coli.
3. Juvenile polyposis.
4. Hyperplastic polyp.
Yesterday’s Mind Teaser: A 40 year old male had undergone splenectomy 20 years ago. Peripheral blood smear examination would show the presence of:
1. Dohle bodies
2. Hypersegmented neutrophils.
4. Howell-Jolly bodies.
Answer for yesterday’s Mind Teaser:: 2. Familial polyposis coli.
Correct Answers received from: Dr.M.Mahesh, Dr Shangarpawar, Daivadheenam Jella, Dr Avtar Krishan, Dr.K.V.Sarma.
Answer for 24th Feb Mind Teaser: 4. Howell-Jolly bodies.
Correct Answers receives: : Dr Avtar Krishan, Dr. Poonam Chablani, Raju Kuppusamy
- This is Dr.Raju Paturi IMA member and totally agree with Dr. Aggrawal's Mail regarding medical devices and pricing details.
- Dear sir, Regarding health policy I want to suggest you that We should strongly oppose the MTP information mandatory. Otherwise it will cause alot of complication to our doctors. With regards: Dr Mritunjay Singh
- IMA Secretary Jamshedpur
News on Maps
Deciding to take up jogging, the middle–aged man was astounded by the wide selection of jogging shoes available at the local sports shoe store.
While trying on a basic pair of jogging shoe, he noticed a minor feature and asked the clerk about it.
"What’s this little pocket thing here on the side for?"
"Oh, that’s to carry spare change so you can call your wife to come pick you up when you’ve jogged too far." …
Press Release of the Day
UNICEF and Indian Medical Association partner against Child Sexual Abuse (CSA)
Launches 10-key action points about CSA, for medical practitioners
UNICEF and the Indian Medical Association (IMA) have joined hands to strengthen the response of medical practitioners in identifying, reporting and treating cases of child sexual abuse.
CSA is a widespread phenomenon and can cause lifelong consequences on the physical and mental health of a child In India, 4.5% of girls aged 15-19 have been subjected to sexual abuse . Boys are also exposed to sexual violence but usually to a less extent.
In 2012, India adopted the Protection of Children from Sexual Offences (POCSO) Act, a comprehensive law which defines a child as any person below the age of 18. The Act applies to all cases of sexual assault on a child. It defines sexual offences as penetrative sexual assault (Section 3), (non-penetrative) sexual assault (Section 7), sexual harassment (Section 11) and use of a child for pornography (Section 13).
Any sexual activity with a child is a crime.
Announcing the special partnership, UNICEF India and the IMA said that they will equip medical practitioners with a detailed understanding of diverse facets of child sexual abuse (CSA), along with relevant legal provisions. Medical practitioners are often the first point of contact in a child sexual abuse case, and are required to take prompt action to ensure immediate and effective treatment of the child.
The program aims to build a nation-wide cadre of doctor-trainers who can later disseminate the knowledge at different levels. Under the supervision of IMA state branches, these doctor-trainers will take the training forward to state and district levels. To assist these trainers, UNICEF has provided technical support to IMA for the preparation of a Teaching Manual, and Key messages for doctors. The focus will be to inform and implement 10-key action points about CSA that every doctor should know while handling cases of sexually abused children.
Addressing a press conference David McLoughlin, UNICEF India Deputy Representative, said, “Violence against children is all too often unseen, unheard and underreported. This partnership with the medical fraternity of the country will play a key role in strengthening the care for child survivors and in bringing new ideas and expertise to support our mission in generating awareness among medical and allied professionals”.
“Medical professionals have a critical role to play in the prevention, detection and response to sexual offences against children. They are often the first point of contact who come across a child abuse case and are required to take prompt action to ensure immediate and effective treatment of the child,” said Padma Shri Awardee Dr A Marthanda Pillai National President and Padma Shri Awardee Dr KK Aggarwal, Honorary Secretary General IMA in a joint statement.
“Every case of child sexual abuse has to be taken as medical emergency. Treatment has to be provided free of cost by the government as well as private medical facilities. In a case of sexual assault of a child, it is the legal duty of a doctor to give medical care, collect forensic evidence, report the offence to the police and give testimony in court if required. Under Section 166B of the Indian Penal Code (IPC), a doctor who refuses to perform a medical examination in a case of sexual assault can be punished with imprisonment up to one year and / or fine” are a few of the messages to be known by every doctor in the country added Dr. Aggarwal.
Releasing the set of 10 key action points about CSA, for medical practitioners, Dr. Aggarwal added, “These messages will be distributed to more than 2.5 lakh medical doctors through 30 state level branches and 1700 district branches of IMA.”
Supporting the initiative, eminent Indian classical dancer and choreographer Padma Vibhushan Awardee, Sonal Mansingh said, “All children have the right to live free from violence. We believe that they are closer to God and therefore any violence on them is a sin. Violence harms their physical and mental growth. Violence against children is entirely preventable, when people come together and say that it is not acceptable. When they make the invisible visible. I appeal to one and all to support the initiative whole-heartedly and respect their dignity and self esteem.”
In addition to developing the capacities of medical practitioners, the two organizations, together with media partners, will pool resources to strategize and provide a platform to create a discourse on child sexual abuse in India.
This association is another step forward in UNICEF’s work to address violence against children and hence it also becomes a very important part of UNICEF’s campaign to ‘End Violence against Children’.
Launched by UNICEF as a global initiative, the ‘End Violence against Children’ campaign builds on the growing consensus that violence against children can no longer be tolerated and that serious attention and collective action are required to reduce violence against children.
Several other celebrities have voiced their concern and pledged to protect children against violence. A video capturing voices of UNICEF celebrity Ambassadors and advocates was screened at the launch today.
Veteran actor Amitabh Bachchan, has called everyone to fight against child abuse, “Join us. Speak up,” he says in an audiovisual message. Madhuri Dixit Nene says, “Children deserve a serene childhood, without humiliation, suffering and violence.” Farhan Akhtar, director and actor, says, “Every single one of us knows there is violence and that it is perpetuated on the most helpless, fragile citizens amongst us all—children.” Ace cricketer Virender Sehwag says violence is never the answer to anything. It breaks children’s trust in you. Actor Priyanka Chopra says, “Children trust easily and that trust must never be broken.” She pledged to break the silence of every child who suffers alone. Kareena Kapoor Khan said, “Violence against children is no way to show concern or discipline.” To see, other celebrity pledges, please visit https://www.youtube.com/watch?v=d_tFL2oX2gg
The UNICEF-IMA project will also aim to advocate for training on child sexual abuse in the curriculum for medical students and doctors through Medical Council of India and the Ministry of Health & Family Welfare of the Government of India.
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UNICEF promotes the rights and wellbeing of every child, in everything we do. Together with our partners, we work in 190 countries and territories to translate that commitment into practical action, focusing special effort on reaching the most vulnerable and excluded children, to the benefit of all children, everywhere. For more information about UNICEF and its work visit: www.unicef.org
Indian Medical Association is the only representative, national voluntary organization of Doctors of Modern Scientific System of Medicine, which looks after the interest of doctors as well as the well being of the community at large. It has its Headquarter in Delhi and State / Terr. Branches in 29 States and Union Territories. It has over 2, 15,000 doctors as its members through more than 1650 active local branches spread across the country.
About the Editor
National Science Communication and Dr B C Roy National Awardee, Honorary Secretary General IMA, Immediate Past Senior National Vice President IMA, Professor of Bioethics SRM University, Sr. Consultant Medicine & Cardiology, Dean Board of Medical Education, Moolchand, President Heart Care Foundation of India, Chairman Legal Cell Indian Academy of Echocardiography, Editor in Chief IJCP Group of Publications & eMedinewS, Member Ethics Committee Medical Council of India (2013-14), Chairman Ethical Committee Delhi Medical Council (2009-14), Elected Member Delhi Medical Council (2004-2009), Chairman IMSA Delhi Chapter (March 10- March13), Director IMA AKN Sinha Institute (08-09), Finance Secretary IMA (07-08), Chairman IMAAMS (06-07), President Delhi Medical Association (05-06)