About Careers MedBlog Contact us

Children With Rare Genetic Disorders to Appeal to PM for Financial Help

by Kathy Jones on February 28, 2013 at 8:09 PM
Font : A-A+

 Children With Rare Genetic Disorders to Appeal to PM for Financial Help

In a desperate bid to gain financial assistance and better treatment facilities from the government, a group of 100 children suffering from rare genetic disorders carried out a silent march in New Delhi.

Children suffering from Lysosomal Storage Disorders (LSDs), a group of around 45 rare genetic disorders of which five are treatable, participated in the march at Jantar Mantar.


According to sufferers, due to lack of funds and government aid, even those children whose disease can be treated, continue to suffer as their families are not able to bear the cost of the treatment.

"I know my son can lead a better life, if not a normal one, provided he is treated on time," said Raj Kumar Yadav, a farmer from Bihar, whose six-year-old son was diagnosed with LSD three years ago.

Some participants complained that delayed treatment made the disease incurable in their case and they don't want this to happen to other patients in nascent stage.

"Due to ignorance, my family members did not consult a doctor before I was 16, and they noticed that my growth had stunted," said Dharmendra.

"When I met the doctors at AIIMS here, they took around two years to conduct tests only to say that there is no treatment for my disease. I don't want that to happen to my brother, who is also suffering from the same diseases but is in nascent stage," added Dharmendra.

Sib Shankar Chowdhury, secretary, Lysosomal Storage Disorder Support Society, an NGO that works towards the betterment of such children, said despite detection of the disease, these people are not getting timely treatment.

"These families are now at crossroads. Even after the detection of the disease, they are unable to do anything. In fact, due to lack of timely treatment, a few children have even succumbed to death. Only government support can save them now," he said.

Source: IANS


Recommended Reading

Latest Genetics & Stem Cells News

A Ray of Hope: Adrenal Hyperplasia may Get a Cure Soon
Scientists have developed the first humanized mouse model for a rare hereditary condition.
Placenta Joins the Brain in Determining Genetic Risk of Schizophrenia
A recent study discovered that the placenta, rather than only the brain, is crucial in determining the genetic risk of schizophrenia.
Scientists Discover Gene Responsible for Severe Facial Defects
FOXI3 gene was found to be involved in Goldenhar syndrome, one form of developmental disorder, revealed research.
Beyond the Blueprint: Understanding the Role of Epigenetics
Contrary to previous beliefs, genes may not be fixed and can be influenced by environmental factors and lifestyle choices, according to modern scientific research.
Gene Therapy Shows Promise in Inherited Eye Disease Trials
Gene therapy successfully tested on dogs with inherited eye disease is now poised for clinical use in humans.
View All
This site uses cookies to deliver our services.By using our site, you acknowledge that you have read and understand our Cookie Policy, Privacy Policy, and our Terms of Use  Ok, Got it. Close

Children With Rare Genetic Disorders to Appeal to PM for Financial Help Personalised Printable Document (PDF)

Please complete this form and we'll send you a personalised information that is requested

You may use this for your own reference or forward it to your friends.

Please use the information prudently. If you are not a medical doctor please remember to consult your healthcare provider as this information is not a substitute for professional advice.

Name *

Email Address *

Country *

Areas of Interests