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Patients suffering from rare Genetic Diseases hold Silent Protest March against Costly Treatments

An awareness programme held after the walk witnessed a discussion on the ways and means of funding the treatment of rare genetic disorders

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Medicines (representational image). Pixabay

New Delhi, Sep 30, 2016: Patients suffering from Lysosomal Storage Disorders, or rare genetic diseases, organised a silent protest march to seek that the government frame a policy on the issue and allocate funds for their costly treatment, a release said.

Holding placards and banners to highlight their plight, over two dozen patients, and their caregivers participated in the march from Jantar Mantar to Connaught Place, organised by the Lysosomal Storage Disorders Support Society (LSDS).

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“Two committees have been formed this year to address the concerns of patients with rare diseases including LSDs but nothing concrete has emerged in terms of providing free treatment, the primary demand of patients and families,” said the release.

It said while the Delhi government formed a committee under the chairmanship of Dr. D K Tempe, Dean of Maulana Azad Medical College in February 2016 to develop a policy and funding for rare genetic diseases, another committee was constituted by the Union Health Ministry this year for developing a policy on providing medicines for treatment of rare diseases.

Maulana Azad Medical College. Source: mamc.ac.in
Maulana Azad Medical College. Source: mamc.ac.in

An awareness programme held after the walk witnessed a discussion on the ways and means of funding the treatment of rare genetic disorders.

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“Treatment for LSDs is beyond the reach of patients. Government support in terms of funding is imperative to help them lead a normal life. We urge the government to expedite the process of forming a policy and funding system for the treatment of LSDs without further delay so that patients get timely treatment,” said LSDS President Manjit Singh.

In Delhi, there are 14 known patients suffering from Gaucher disease, the most common form of LSD, said the release. The disease is an inherited genetic condition that causes fatty deposits to build up in organs and bones, as its sufferers do not have enough of an important enzyme (glucocerebrosidase) required to break down a certain type of fat molecule (glucocerebroside).

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Enzyme Replacement Therapy (ERT), the most effective treatment for LSDs, is available in India but most patients are deprived of receiving it due to the high cost. These treatments are not supported by government or insurance companies unlike in developed countries, the release said. (IANS)

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Patients who Survive Ebola often Continue to Face Numerous Health Problems: Study

They have to face numerous health problems

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Laboratory technician Mohamed SK Sesay, who survived Ebola but saw many of his colleagues die and now has joint and muscle pains and loss of sight, holds the child of one of his work colleagues who died of the disease, in Kenema, Sierra Leone
Laboratory technician Mohamed SK Sesay, who survived Ebola but saw many of his colleagues die and now has joint and muscle pains and loss of sight, holds the child of one of his work colleagues who died of the disease, in Kenema, Sierra Leone. VOA
  • Approximately 11,000 people died in the Ebola outbreak that hit West Africa from 2014 to 2016
  • Many battled vision problems and headaches that lasted for months
  • They show some quite distinct scarring patterns

Sierra Leone, West Africa, August 25, 2017: Patients who survive infection with the Ebola virus often continue to face numerous health problems. New research finds 80 percent of Ebola survivors suffer disabilities one year after being discharged from the hospital.

Approximately 11,000 people died in the Ebola outbreak that hit West Africa from 2014 to 2016; tens of thousands more who were infected survived.

Of those survivors, many battled vision problems and headaches that lasted for months.

Researchers at the University of Liverpool, the UK and the Liverpool School of Tropical Medicine, UK are studying what’s called post-Ebola syndrome. One of the senior authors of the study, Dr. Janet Scott, says researchers are unsure why survivors experience such disabilities.

“I’m not sure we’ve quite gotten to the bottom of it yet,” Scott said. “The idea that you go through something as horrific as Ebola and just walk away from that unscathed was always a bit of a vain hope. So, it could be the inflammatory response. It could be damage to the muscles, and it could be the persistence of the virus in some cases. It could be all of those things.”

Scott says problems found in Ebola survivors’ eyes may provide clues to what is happening elsewhere in the body.

“They show some quite distinct scarring patterns,” she said. “There’s definitely scar tissue there. We can see it in the eyes. We can’t see it in the rest of the body, but I’m sure it’s in the rest of the body because the patients are coming in with this huge range of problems.”

The disabilities were reported in past cases of  Ebola outbreak, as well. However, because past outbreaks were smaller and there were few survivors, researchers were not able to do major, long-term studies on the after effects.

ALSO READ: Indian-origin Scientist part of the team that discovered natural Human Antibodies to fight Ebola viruses

This time, said Scott, “There are 5,000 survivors or thereabouts in Sierra Leone, and more in Guinea and Liberia. So, it’s an opportunity from a research point of view to find out the full spectrum of sequelae … the things that happen after an acute illness.”

Military Hospital 34 in Freetown, Sierra Leone, also took part in the study, helping to recruit 27 Ebola survivors and 54 close contacts who were not infected. About 80 percent of survivors reported disabilities compared to 11 percent of close contacts.

“The problems we’re seeing in Ebola survivors, this is not due just to the tough life in Sierra Leone. This is more than likely down to their experience in Ebola,” Scott said.

The research was led by Dr. Soushieta Jagadesh, who said: “a year following acute disease, survivors of West Africa Ebola Virus Disease continue to have a higher chance of disability in mobility, cognition, and vision.”

“Issues such as anxiety and depression persist in survivors and must not be neglected,” she added.

Scott hopes the findings can be used to provide better care in the event of another Ebola outbreak, no matter where it is. In the West Africa outbreak, the first goal was to contain the epidemic, followed by reducing the death rate.

“If I was treating an Ebola patient again, it has to be more than just surviving,” Scott said. “You have to try to make people survive well. Surviving with half your body paralyzed or with your vision impaired and being unable to care for your family or earn a living isn’t really enough. So, what I would like to do is to focus on that aspect to make people survive better and survive well.” (VOA)

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Raja Chari: Indian American Astronaut chosen by NASA

Raja Chari, an American of Indian descent, has been chosen by NASA as one of the 12 astronauts for a new space mission.

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Raja Chari. Twitter.
  • Raja Chari is an American of Indian descent chosen by NASA for the new batch of astronauts
  • Currently, he is a Lieutenant Colonel in the US Air Force
  • Chari will have to go through two years of astronaut training which begins in August

June 06, 2017: NASA has chosen 12 astronauts out of a record-breaking 18,300 applications for upcoming space missions. An American of Indian descent, Raja Chari, has successfully earned his spot in the top 12.

The astronauts were selected on the basis of expertise, education, and physical tests. This batch of 12 astronauts is the largest group selected by NASA since two decades. The group consisting of 7 men and 5 women surpassed the minimum requirements of NASA.

Born in Waterloo, Iowa, Chari graduated from Air Force Academy in 1999 with a bachelor’s degree in Astronautical Engineering and Engineering Science. He went on to complete his master’s in Aeronautics and Astronautics from Massachusetts Institute of Technology. The astronaut is also a graduate of US Naval Test Pilot School.

Currently, Raja Chari is a Lieutenant Colonel in the US Air Force. He is the commander of 461st Flight Test Squadron and director of the F-35 Integrated Test Force at Edwards Air Force Base in California.

After Late Kalpana Chawla, Lt. Col. Raja Chari is the second Indian American astronaut chosen by NASA.

The 12 astronauts will have to go through two years of training. Upon completion, they will be assigned their missions ranging from research at the International Space Station, launching from American soil on spacecraft by private companies, to flying on deep space missions on NASA’s Orion Spacecraft.

The US Vice-President Mike Pence visited the Johnson Space Centre in Houston to announce and congratulate the new batch. Pence also said that President Trump is “fully committed” to NASA’s missions in space.

by Saksham Narula of NewsGram. Twitter: @Saksham2393

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Over 5,000 Plant Varieties in Last 3 Years sent in by Tribal Farmers to protect the species : Minister

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Tribal Farmers
tribal farmers submitted more than 5,000 plant varieties in last three years (representational Image). Wikimedia

New Delhi, June 8, 2017: Union Agriculture Minister Radha Mohan Singh on Wednesday said tribal farmers submitted more than 5,000 plant varieties in last three years through Krishi Vigyan Kendras for registration at the Protection of Plant Variety and Farmers Rights Authority.

It will play an important role in the development of climate resilient and sustainable varieties in future, he said at the National Workshop on Empowerment of Farmers of Tribal Areas here.

“New technological innovations in agriculture must reach to the fields of tribal areas but before taking such steps we must keep in mind the unique conditions of these areas, which are the gift of nature and therefore, we should promote natural farming in those areas,” he said, as per an official release. (IANS)

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