Daily Archives: March 18, 2018

A group that helps and heals

Records, All, Science & Technology

30-odd TS residents fighting a rare genetic condition bond on social media groups

People suffering from a rare genetic skin condition, which impairs ability to control body temperature, have formed a small, functional support group in the State that has grabbed global attention.

Called ichthyosis, it causes overproduction of skin cells resulting in development of scales across the body.

The name is derived from Greek for ‘fish-like skin’. In India, it affects one in 20,000 people and hence, is rare.

The support group, which began as an online collective for those with ichthyosis in India currently, includes people from South and West Asian countries including Bangladesh, Pakistan, Nepal, Iran and Afghanistan. People from Hong Kong, United States and Sweden are also part of it.

The group connects people both on Facebook and WhatsApp, and has over 30 members at present.

Christina Raj (40), who has lived with the condition all her life, tells The Hindu, “Normal life is impossible. It (ichthyosis) is a challenge which makes you take bath at least three times a day. One has to wash the face at least once every hour to keep the scales from appearing and body temperature from rising.”

Christina started the WhatsApp group in 2017; the Facebook group was active since 2013. Apart from scaly skin, the condition lead to brittle bones that need constant care.

Fat medical bills

While there are both less severe and fatal types of ichthyosis, the support group mainly caters to people who suffer from the most acute form.

Eight persons from Hyderabad and surrounding districts including Nalgonda and Warangal are part of the group. The age group of those suffering from the condition is anywhere between 14 and 40 years.

Medical expenditure of each patient, who needs care in moderate to severe cases of ichthyosis, works out to ₹5,000 to ₹10,000 every month for medicines and lotions to save the skin from irretrievable dryness as well as injury.

Battling stigma

Sai Chaitanya (21) of Nalgonda, who also has ichthyosis, says he cannot afford treatment and suffers injuries each day.

Prolonging treatment makes the toes crooked and callused. If left untreated, it might lead to breaking of limb bones and joints .

In many cases, scaling of skin also leads to social boycott. “Children suffering from this condition are not admitted in schools because they injure easily and are teased by others who find them ‘different looking’. All of my schooling was done at home,” Ms. Raj says.

Currently, the group has a 14-year-old girl who studies in a private school in Secunderabad. Two teenage boys in Warangal also feature as members of the group.

Genetic testing must

Doctors who specialise in ichthyosis treatment said genetic testing and eradication is must of this condition, which is considered a severe disability in developed countries including the US.

“In India, we do not have a standardised genetic testing panel. A genetic panel will have to be developed by testing the genes of several people within the same population. The panel developed after continually testing the population can then be used as a standard with which conditions like ichthyosis can be compared. Developing genetic panels reduces costs for testing and treating people with genetic disorders,” Dr. Ayush Gupta, a Pune-based physician, who specialises in ichthyosis and dermatology tells The Hindu.

The online group is expected to approach the government to demand medical aid for those suffering from the condition.

“In countries like the US, the government provides a month’s kit of medicines, lotions and other essentials for patients. We would expect subsidy in medical care,” Ms. Raj adds.

source: http://www.thehindu.com / The Hindu / Home> News> Cities> Hyderabad / by Nikhila Henry / Hyderabad – March 17th, 2018

Forest officer saves trees and dignity of his department too

Green Initiatives / Environment, Inspiration / Positive News and Features, Nature
Braving odd: The gutsy Indhanpalli Forest Range Officer R. Srinivas Rao who saved several trees braving immense political pressure. | Photo Credit: S_HARPALSINGH

Refusing to succumb to official pressure, gutsy FRO chalks out alternative road diversion plan in Kawal Tiger Reserve

The likes of R. Srinivas Rao, the Forest Range Officer (FRO) of Indhanpalli range in Kawal Tiger Reserve (KTR), are a rare species in the State. As many as 30 trees stand testimony to his steely resolve towards protection of the forest, which would otherwise have been stripped of greenery for creating a road diversion.

Braving immense political and official pressure, the gutsy forest officer saved several trees, thereby upholding the honour and dignity of his department. Not just that, he even demonstrated that damage to environment can be minimised if enough thought is given to the otherwise conventional idea of ‘development’.

The government has taken up the task of strengthening old bridges passing through KTR, mostly in Mancherial and Nirmal districts. It is alleged that the developmental work was taken up without due permission and a good number of trees were felled when new and large bridges until Jannaram from Luxettipet side were commissioned to create diversion from inside the forest.

Mr. Rao, who took over as FRO of Indhanpalli just six months ago, however, did not allow cutting of trees when R&B authorities wanted to create a diversion from the new bridge near the Anjaneya temple.

“I did not recommend felling of the 30 fully matured trees, 18 of which are teak, as it meant a lot of destruction just to create a diversion,” he says.

The not-so-busy Luxettipet-Nirmal road is 66 feet wide and the bridge needed to have a width of 10 metres. No tree was needed to be sacrificed for expanding the existing three-metre wide bridge, the FRO felt. “I wanted the R&B officials and the contractor to explore the possibility of a diversion without felling even a single tree. What I got instead of a plan was calls from various quarters to relent,” chuckles Mr. Rao.

Finally, the road authorities themselves relented and worked as per the plan shared by the forest officer. That included not just sparing the trees but setting up of the camp for the workforce away from the site of the bridge.

“I ensured that the camp was not set up at the place as wild animals criss-cross the area in the night. There would have been lot of disturbance in the forest due to movement of labourers,” the FRO signs off.

source: http://www.thehindu.com / The Hindu / Home> News> Cities> Hyderabad / by S. Harpal Singh / Indhanpalli (Mancherial District) / March 17th, 2018