January 30, 2021
News and Events 
December 25, 2020
News and Events
HUNTINGTON DISEASE SUPPORT GROUP INDIA (HDSG, India)
Support groups can offer vital emotional support, valuable advice about community-based resources as well as guidance from other group members about many of HD’s most challenging situations. HDSG is can be established for everyone in the HD community —caregivers, those living with HD, those living at risk, youth at risk, etc.
Roles & Boundaries of HDSG:
• To provide a space to share each other’s dilemmas, struggles, anxieties as a patient or caregiver.
• To discover alternative ways of dealing with the patient.
• There will not be individual counselling but a space for the group to connect with each other.
• To discover that ‘I am not alone in this journey’.
Activities:
• Online meeting
• Guest session by a doctor/experts.
• Group sharing
Day: Last Friday of every month
Time: 3:00 p.m. to 4:00 p.m.
Mode of meeting: Zoom meeting online. Meeting ID and Password will be given once form is filled.
*Registration formalities: Please fill the google form by pressing ctrl and clicking on the link below:
https://forms.gle/LNeaQVL4ZpAjVxzi9
September 18, 2020
News and Events
HDSI Workshop
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The second HDSI Workshop was conducted on 7th March 2020 at DRDO’s Officer’s Mess premises, Bangalore. The workshop included knowledge sharing and open discussion with the patients and families on different subjects.
Dr. Sanjeev Jain shared several experiences that he has encountered while treating HD patients. He focused on the need for Genetic Counselling before opting for HD testing and possible impact on the patient and family after test results are shared. He stressed on the importance of maintaining a patient registry for Huntington’s disease in India. There exists no official count to estimate of how many families are affected by this disease. In order to request any aid or assistance for our patients we need to be able to say how many patients need this facility and will benefit. So starting a patient registry for Indian HD patients is the need of the hour.
Dr Nikhil Ratna spoke on the clinical outcome for HD patients in his clinical experience. Dr Nikhil explained the spectrum of clinical outcomes in HD. While the illness is not currently curable, it is certainly treatable. Often these families have encountered a bleak picture from the medical fraternity when they have sought information about the disease.
Along with their own fears and misinterpretations they conclude that it is futile to seek medical help as anyway nothing can be done. This is very wrong. The disease itself is not fatal though debilitating. There are several aspects of the illness that can be managed better with the right advice at the appropriate time from different experts.
Simple medication and tips can bring relief to patients and their carers. For example, the kind of diet, the consistency of food, the care to be taken while feeding all seem very trivial but if not done carefully can lead to aspiration and pneumonia complications. Similarly, keeping a safe physical environment and preventing falls is very important. Addressing patients and treating them normally will maintain their mental well being.
While patients may be unable to speak and respond normally because of movements, they can hear and understand quite well. Thus, it is important for patient families to be in touch with clinicians. We hope that the HDSI can create a network of such experts who can reach out to patient families in the vicinity.
Dr. Vijaykumar Harbishettar recounted his experience of caring for HD patients in the UK. He explained the possibility of Home care facilities that are available and its necessity. He also explained how it can be availed. He is recently associated with Health Heal, an organisation that provides home care for several patients and is assisting Health Heal to understand the needs of HD and Dementia patients and to train the staff to take care of these needs.
September 18, 2020
News and Events
Huntington Disease Summit
Introduction
Today HD affected families in India face a plethora of challenges in dealing with the disease with meagre institutional support. Clinicians and health care professionals face their own challenges in treating, in keeping abreast with the rapidly evolving guidelines. This HD conference is the first in India to discuss the important aspects of HD for the benefit of affected families and the involved professionals. This event will be graced by the president of IHA, the president of EHA, founding director of George Huntington institute besides prominent clinicians and therapists from India
Objectives
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To bring about changes in the model of care, attitudes, protocols for treatment and give boost for HD research in India.
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Formal announcement of the HD society for India, a platform through which all the stakeholders work together with shared objectives and vision.
Venue
Conference Hall, MV Govindaswamy building. NIMHANS, hosur road, Bengaluru 560029
Dates
August 16th & August 17th 2019
Themes of the Conference
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HD clinical aspects, latest pharmaco-non-pharmacotherapy guidelines for treatment
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Ethics involved in HD diagnosis (symptomatic, pre-symptomatic, pre-natal) and importance of genetic counselling
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Research in HD, latest drug trials, hope for the future
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Unmet needs of HD patients and the need for improved health services (Patient’s perspectives) through policy changes.
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Establishment of HDSi, aims, objectives, road map for next 2 years- Press meet
PROGRAMME
Day 1: 16thAugust 2019 |
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8.30 am onwards |
Registration |
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Inauguration and Lighting of the Lamp |
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9.30 -10.40am |
Invocation/Director’s address /HOD address/ Inauguration of HDSI Address by Founder member of HDSI : Dr Nayana ShahHD: the international perspective : Mr Svein Olaf Olsen
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Tea Break (10.40-11.00AM) |
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Clinical Services and care for HD in IndiaChairs:Dr Sanjeev Jain & Dr Ravi Yadav |
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11.00-11.50am |
HD experience at the NIMHANS Clinic : Prof Pramod PalHD experience in Kolkata : Dr Hrishikesh Kumar |
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Present and future prospects for HD treatmentChairs: Dr Vijay Chandru & Prof Sharat Chandra |
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12.00- 12.50pm |
Clinical trials – Nuts and bolts: Dr Ralf ReilmannOpen platform for Rare diseases: Dr Vijay Chandru |
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1.00-1.30pm |
Update on treatment guidelines for HDPanel Discussion : Dr RalfReilmann,Dr Sanjeev Jain, Dr Pramod Pal & Dr Hrishikesh Kumar |
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Lunch break with posters(1.30-2.30PM) |
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HD diaries |
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2.30-4.30pm |
Dr Meenakshi Bhat: Introduction of ethical issues in late onset disorders
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Tea break (4.30-5.00 PM) |
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Patient narratives contd.Chairs: Dr Nikhil Ratna and Dr Meera Purushottam |
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5.00-5.40pm |
The European HD family experience: Ms Astri Arnesen & Mr Svein Olaf Olsen |
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Caring for a patient with dementia: Wing Cmdr Sabbarwal |
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Day 2: 17thAugust 2019 |
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9.00am – onwards |
Registration |
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Genetics of Huntington’s diseaseChairs: Prof Sharat Chandra/Dr Ralf Reilman ; Dr. Gautham Arunachal & Dr Sanjeev Jain |
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9.30-10.00 am |
HD genetics, history and geography; the road ahead : Dr Sanjeev Jain |
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10-10.40 am |
Genetic Diagnostics & Ethical Issues: Dr Meera Purushottam & Dr Nikhil RatnaPre implantation genetics, prenatal counseling: Dr Sridevi Hegde |
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Tea break (10.40-11.00am) |
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Support for HDChair: Dr Meera Purushottam |
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11.00-12.20pm |
Outcome and co-morbidities in HD : Dr Nitish KambleHD rehabilitation and care: Dr B K Yamini |
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IHA organization and support for HDSI : Mr Svein Olaf Olsen |
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EHA – model/insights for patient support group: Ms Astri Arnesen |
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12.30-1.30pm |
Question answer session |
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Lunch break with posters (1.30-2.30PM) |
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2.30-3.00pm |
Travails and Victories of Thalassemia Patient Groups: From Disability Bill toFree Medicines : Dr Namitha Kumar |
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3-3.20pm |
HD treatment – is Insurance available? : Ms Vijayalakshmi Magal |
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3.20-3.40pm |
Targeting mutant huntingtin toxicity by DNA aptamers and small molecules: Dr Ravi Vijayvargia |
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3.40-4.00pm |
Questions and Answers |
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4.30-5.00pm |
Concluding Session |
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High tea for all participants(5.00-5.30pm) |
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5:30-6:30pm |
HDSI, aims, objectives, road map ahead (HDSI board members and advisors) |
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List of Speakers
Dr Ralf Reilmann,Founding director, George-Huntington-Institute, Muenster, GermanyDr Nayana Shah,Director, Manthan- Centre for Human and Organization Development,Ahmedabad, INDIA
Mr Svein Olaf Olsen,President, The International Huntington´s Association, Norway
Ms Astri Arnesen, President, European Huntington Association, Norway
Dr Sanjeev Jain, Professor,Molecular genetics laboratory, Dept of Psychiatry, NIMHANS
Dr Pramod Pal, Professor,Department of Neurology, NIMHANS
Dr Hrishikesh Kumar, Head,Department of Neurology, Institute of Neurosciences, KolkataDr Vijay Chandru,co-Founder & Director at Strand Life Sciences, Bengaluru, Karnataka, IndiaDr Sridevi Hegde,Head, Department of Medical Genetics, Manipal Hospital,Bengaluru
Prof H Sharat Chandra,Honorary Director, Centre for Human Genetics, Bengaluru
Dr Meenakshi Bhat,Faculty, Centre for Human genetics, Bengaluru.
Dr Ravi Yadav,Professor, Department of Neurology, NIMHANS.
Dr Nitish Kamble, Assoc ProfessorDepartment of Neurology, NIMHANS
Dr B K Yamini, Asst Professor, Department of Speech pathology, NIMHANS
Dr Namitha Kumar, Scientist,Centre for health Ecologies and Technology (CHET), BangaloreDr Meera Purushottam, Senior Scientific officer, Molecular Genetics lab, Dept of PsychiatryDr Nikhil Ratna,Doctoral Student, Department of Clinical Neurosciences, NIMHANS
Dr Ravi Vijayvargia,Department of Biochemistry, M .S. University of Baroda
Dr Gautham Arunachal, Asst Professor, Department of Human genetics, NIMHANS
Ms Vijaylakshmi Magal,Insurance Consultant and Trainer, Bengaluru
Organizing Committee
Dr Sanjeev Jain
Dr Pramod Pal
Dr Nitish Kamble
(Dr Yamini
Dr Selva Ganapathy
Dr Priya Thomas
Dr Meera
September 18, 2020
News and Events
HD Session At Ahmedabad
A small session on Huntington Disease was organized by Dr. Nayana Shah who is one of the board of director of Huntington Disease Society of India (HDSI) on 13th August 2019 at Crowne Plaza, Ahmedabad.
The guest speakers were Mr. Svain Olaf who is the President of International Huntington Association and Ms. Astri Arnesan who is the president of European Huntington Association.
The focus of the session was to create awareness about Huntington Disease in India and the session was graced by Neurologists and family members of the patients suffering from Huntington.
Sharing few excerpts of the session for all of you:
Mr. Svein Olaf
It is a family disease and it take 7 years for the patient to come to the doctor with its symptoms.
There are so many researches happening in the world to slower the progress of Huntington disease.
It is very much necessary for the people suffering from Huntington to get together and met as a family and talk about the disease.
Ms. Astri Arnesan
It is a neurological and complex disease which requires diagnosis.
It is genetic and the patient needs to know that it is a family disease.
There are interventions like physical, sleep etc. which are required to improve the life of Huntington patients.
It also has psychiatric symptoms in all the patients and depression is common in them which needs to be treated.
There are few big pharmaceutical companies who are researching in the field to find cure of this disease and the days are not far where atleast the process of rapid progress in Huntington is slowed.
Dr. Nayana Shah
There is an emotional stigma around the disease and many people are not ready to deal with it. The family members feel ashamed about the movement and behaviour of the patient.
Dr. Shalin Shah, Dr, Arvind Sharma and Dr. Swati Shah (Neurologists)
Many people cannot afford to go for the check up and to come for the medication and since there is no cure available as of now, people don’t want to spend money for something which will bring no change in their life.
There is no bridge between a patient and a doctor as there are no counselors available to guide the patients about the disease.
HDSI can help in collecting the newsletters/research to the doctors, they can provide it to the patients and try to help them.
Family Members
There were questions from the family members which Ms. Astri & Mr. Svein answered significantly.
Questions by the family:
What is the meaning of cure in Huntington?
What is the age when a patient can start the treatment?
What to do to control mind and body?
