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
