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By Shilpika Srivastava
Imagine being not able to walk or even talk. How would you feel if you’re not able to grab your favorite cookie, or even worse, not even eat it? Imagine being locked in. Well, the pain that you can sense is just a tip of the iceberg.
There are many children on this earth who are leading a challenging life every day due to Rett Syndrome (RTT). Rett Syndrome is a rare genetic neurological disease disorder that predominantly affects girls. And, if it affects boys, it results in early death.
With the help of Social Media, NewsGram reached out to a mother of a beautiful girl, Radhika, who is suffering from RTT. “It broke me when I saw her crying and screaming all night due to her regression phase of Rett. I don’t have words to express the feeling of helplessness, desperation and sheer hopelessness,” she said.
Radhika’s mother’s pain is evident and it seems like it’s a never ending journey for her.
Dr. Munish Raizada, a pediatrician and neonatologist based out of Chicago, says that it is disheartening that Rett occurs in 1 girl on every 10,000 female births, and yet awareness of Rett remains painfully low among the general public. In fact, the scene turns ugly as the medical community of India also does not have much clue about Rett Syndrome.
Indian Rett Syndrome Foundation (IRSF) is working profusely to raise public and professional awareness and understanding about the Rett Syndrome. It provides correct information describing diagnosis, causes, therapies, research and other aspects of this disorder.
NewsGram had an in-depth telephonic conversation with Samir Sethi, president of IRSF, who said that RTT is a mutation in the genes, which occurs naturally. RTT does not have any particular cause for it. The secretary of the foundation, Harsh Malhotra, who is also a father of a pretty daughter suffering from the syndrome, said that during the pregnancy itself, the mutation starts taking place in the DNA of the baby.
How RTT is diagnosed and what are its symptoms?
“There are two ways to diagnose it: Clinically and through a genetic test. However, both the tests have to go hand in hand to confirm the diagnosis,” said Mr. Sethi.
He further explained that the children dealing with RTT grow at a normal pace from 6 to 18 months. These children are the ones who have missed their milestones. A normal child is supposed to start sitting at about six months. However, when a girl is suspected of suffering from RTT, it is likely that she may not start to maintain her balance while sitting until about 9 months or 12 months. Therefore, instead of picking up the milestones, the child is actually going backwards and missing out on the learning, which turn out to be the first indication of RTT.
“The second indication is regression in the growth of the head circumference. Parents should notice that the head circumference of such children does not grow as a normal child as per the age,” added Mr. Sethi.
Thirdly, the child starts getting aloof. Normally, children at this particular age are very social. They mix with everybody, they play, they run around. RTT girls will behave differently. They will cry. They will be cranky. They will not like to interact with anybody. A lot of RTT’s symptoms are quite similar to that of autism.
Mr. Malhotra told NewsGram that there is one strange observation related to Rett Syndrome: they are very happy children despite the daily challenges, and for some reasons, they are also blessed with good looks. These are the reasons that Rett Children are known as ‘Silent Angels’ all over the world.
How is RTT different than autism?
“Autism is very different from RTT. In many cases of autism, you will not find any physical disability. But in RTT, you will find physical disability in almost every child,” stated Mr. Sethi.
He said that girls diagnosed with Rett Syndrome will not be able to walk. They cannot even speak whereas the autistic children are able to speak. It is very rare for a Rett child to talk.
One typical symptom of girls dealing with the syndrome is hand wringing. They will indulge in stereotypical hand movements and continuously rub their palms.
Is RTT curable?
As of now, there is no cure available for the disease. The only thing that can be done at the present moment is extensive rehabilitation, and physical and occupational therapy. However, there is a ray of hope as a lot of research is ongoing to find the cure of Rett Syndrome.
RTT does not cause death in girls!
Speaking about the life expectancy rate of Rett Syndrome, Mr. Sethi told NewsGram that RTT in itself does not cause mortality. However, it is the complexities from RTT that lead to that makes the girls to lose out on their life.
Such children have a tendency to hold their breath for quite a long time as compared to normal children. This, at times, causes suffocation. In addition, they also have problems in terms of digestion. Many times, the food that should go into the food pipe instead goes into their lungs and causes choking.
“We have not heard of any case where a child dies because of RTT. It’s mostly the problems and complexities that come with Rett that cause the fatality,” says Mr. Sethi.
“One very stubborn problem that Rett children have is of pneumonia. A normal child is able to cough out the infection, but children suffering from the syndrome are not capable of coughing out the infection, which leads to accumulation of infection in the lungs. This is a major problem with Rett children resulting in deaths. On the other hand, as these children are also epileptic, it leads to seizures. It gets so worse at times that an emergency care is needed, and sadly there is none in India, and we lost a few girls like that,” expressed Mr. Malhotra.
How IRSF is trying to help the parents and create awareness about Rett Syndrome?
Mr. Sethi said that it is difficult for parents to coordinate with another doctor for a particular thing. For instance, Rett children also deal with epilepsy. A doctor may give one particular medicine for epilepsy; however, that drug might affect the child’s digestion. Therefore, there is a need of a consultation from a gastroenterologist as well. Therefore, IRSF is trying to bring the parents, care takers and doctors under one umbrella.
IRSF operates an annual program to create awareness about Rett Syndrome. They also visit hospitals and educate the doctors so that the moment they get any children like these, they can refer them to the foundation.
“We are working with ministry of social justice, Delhi government’s Department of Health and Family welfare. A disability certificate is required for all of the children suffering from RTT, and it is in the hand of government to issue the certificates. Also, it’s government’s responsibility to issue health insurances for these children. We are coordinating with the government to provide all these things,” added Mr. Sethi.
Mr. Malhotra tagged on that, “We are working with All India Institute of Medical Sciences , LNJP Hospital, GB Pant Hospital. The key concern is that the local doctors, who are the first point of contact for the parents, do not have a clue about RTT. Therefore, the syndrome often gets misdiagnosed as autism or other neurological diseases.”
By Prerana Agarwal Saxena
In all the wedding excitement, it's easy to overlook the impact a wedding has on the environment. While everyone is making their big fat Indian wedding dreams come true, they are also adding their carbon footprint and undue energy consumption. Modern couples are now looking for ways to have a wedding with a sustainably conscious mindset. It's become about incorporating less waste, locally sourced and seasonal food, natural materials over the use of plastic. Mindful wedding planning and decor includes the use of recycled paper and goods along with eco-friendly venue needs. Check out this quick guide to achieve a sustainably conscious wedding without compromising on luxury:
Choose locally sourced material to uplift artisans
Sustainable can be luxurious too, incorporate some native flavour into the decor and theme. With the use of locally sourced materials and local artisans coming into play, the wedding instantly becomes sustainable. Include the work of local vendors ensure minimal packaging requirements, thus saving on unnecessary plastic and lamination. It also decreases the need for transporting elements from other cities and hence lowers the carbon footprint. For instance, at one of our weddings, we made use of sand art for a setup in Jodhpur. This helped promote local work while also being environmentally friendly with zero wastage of other materials. In another instance from Rajasthan, the traditional glass-blown technique was used to build decor items while giving a cultural touch to the destination wedding.
Sustainable can be luxurious too, incorporate some native flavour into the decor and theme. | Photo by Jason Coudriet on Unsplash
Say yes to recycling
One should be mindful and avoid the use of plastic and other non-recyclable materials in decor wherever possible. It can be a small step such as making a conscious switch from plastic water bottles to copper jugs or glass bottles. Also use artificial floral decor thus minimising the wastage produced from real flowers. This recyclable decor is then donated to various NGOs, further ensuring sustainable use of resources. Such steps, however small they might be, keep the environment free from the release of any additional carbon footprint.
One should be mindful and avoid the use of plastic and other non-recyclable materials in decor wherever possible. | Photo by Ravin Rau on Unsplash
Go for zero-waste wedding decor
Make use of fabric as it enhances the elegance of the wedding while being sustainable. Include vibrant colours apt to the theme of the wedding and bring in bright sprightliness with breathable fabrics. Ensure to include LED lights for lighting. They can be incorporated as string lights or be used on passageways with innovative decor items. They also help conserve energy and bring in soulful energy for nighttime decor. Choose virtual invitations, keeping up with the digital times. Make a conscious choice of plated dinner menus rather than a buffet as they allow less wastage of food and ensure enough food for guests in attendance.
LEDs can be incorporated as string lights or be used on passageways with innovative decor items. | Photo by Annie Spratt on Unsplash
Include Sustainable Gifting
Gift sustainable wedding favours -- gifts that grow. Offering a plant or a succulent, is a great idea. One can also gift recycled organic fabrics and cutlery or zero-waste kitchen and bathroom essentials to use in their homes as some distinct gifting options.
Gift sustainable wedding favours -- gifts that grow. | Photo by Kira auf der Heide on Unsplash
Acting in the best interest of the environment and the society, Theme Weavers Designs has started a social cause, Weaving Hope, where a part of their earnings along with food and decor are donated to social communities. Royal Rendezvous, is an event started by us to put India on the Global Map, inviting international wedding planners to India to experience the rich culture and heritage, also employing and displaying the work of local artisans to this international audience.
By applying the values of sustainability, you can reduce the energy consumed and the resources used as much as possible. Go ahead and have a luxurious zero-waste wedding and navigate into the world of green living! (IANS/ MBI)
Keywords: Luxurious , Gift, sustainable, wedding favours, gifts that grow. Gifting, recycling, locally sourced, material. zero-waste
The Tamil Nadu health department has administered 16,43,879 lakh doses of vaccine in the second mega vaccination camp organised by it. The state public health department in a statement on Sunday said that this has taken the total vaccination to one crore since the beginning of September till date. The vaccination was administered from 7 a.m. till 7 p.m. and the compiled data was made available late at night.
The health department officials also said that as the state has almost exhausted its quota of vaccines, there would not be any vaccines on Monday. Regular vaccination will resume after the vaccine supplies arrive from New Delhi, officials said. The state health department had expected to vaccinate 15 lakh people on Sunday in 18,824 centres spread across primary health centres, anganwadis, noon meal centres, government hospitals, schools and some auditoriums.
The health department officials also said that as the state has almost exhausted its quota of vaccines, there would not be any vaccines on Monday. | Photo by Mat Napo on Unsplash
Of the 16,43,879 people who were inoculated, a total of 10,85,097 received their first dose and 5,58,782 their second dose of vaccine, the statement said, A total of 9,66,568 people in the age group of 18-44 were vaccinated on Sunday and vaccines were administered on 5,02,578 people aged between 45- 59 in the mega vaccine camps.
State health minister Ma Subramanian, who inaugurated the vaccination at Pollachi, also visited the centres in six districts -- Coimbatore, Erode, Namakkal, Tiruppur, Dharmapuri and Salem. The state government, according to the health minister, is to receive the next allotment of vaccines on September 21. Minister while speaking to IANS said, "We will be receiving the next allotment of vaccines on September 21 itself and we will resume vaccinations immediately. The state has already touched one crore vaccine-mark in the month of September till date." (IANS/MBI)
Keywords: COVID, vaccine, vaccination camp, Tamil Nadu, India, vaccinated, mega camp
Festivals are just around the corner and while you brainstorm about OOTDs (outfit of the day), don't forget the right makeup. Hanisha Kapoor, COO, ArchiesBeauty.com shares makeup trends experimented by these Bollywood divas throughout 2021 for inspiration. While some stuck to the classics, others mixed it up... take a look:
The Classic Red Lip
We don't see a future where classic red lips go out of fashion. The right way to achieve this celebrity look is to focus on accentuating your lips and keeping the rest of the face minimal. Give your lips a good scrub to plump them, moisturize and follow it up with a red lip liner to define the shape of your lips. Now go on with the perfect shade of red and finish your look with a slick of eyeliner, minimal concealer, and foundation.
We don't see a future where classic red lips go out of fashion. | Photo by Ina Garbé on Unsplash
No Makeup Look
Deepika Padukon is the perfect example of a no-makeup look. This natural beauty does a wonderful job of achieving the minimal soft look by softly cover any dark spots or blemishes and highlighting features she's most proud of. To achieve this start with concealer and use small dots to brighten your darker areas like under eye, corner of the nose or upper lip, and any visible spots, and set it up with loose powder. Apply a soft pink lipstick, light blush, and mascara.
Deepika Padukon is the perfect example of a no-makeup look | Wikimedia Commons
This look shouts pink. When it comes to rosy looks, Janhavi Kapoor does a phenomenal job. Everyone should try a rosy look once in a while. As we are focusing on only one shade, this look is pretty easy to achieve. Bring out your favourite pink lipstick, favourite pink blush, and a matching shade of eye shadow. Start with the base - concealer, and foundation and set it up with loose powder. Follow it up with eyeshadow, lipstick, and blush. Remember to draw a line by not using any pink mascara, eyeliner, or a bold shade of lipstick, as this is meant to be soft on the eyes.
When it comes to rosy looks, Janhavi Kapoor does a phenomenal job. | Wikimedia Commons
Glass Skin Makeup
The glass skin makeup is inspired by Korean skincare. This look is slightly complex with an equal focus on skin before makeup, so slather on those moisturizing serums and creams to prep your skin first. Start with a highlighting primer, keep your foundation and concealer minimal to avoid looking cakey. Follow it up with soft blush & nude lips and lots and lots of highlighter. Use the highlighter on the main points of your face, like upper cheekbones, the centre of the forehead, the tip of the nose, cupid bone, and chin. If you are feeling a bit extra, don't hesitate to put some on your shoulders and collar bones. This celebrity makeup look makes your skin glow without the need for a spotlight.
The glass skin makeup is inspired by Korean skincare. | Photo by 邱 严 on Unsplash
Pop It Up
Put a zing to your party look with the pop of funky colour. This look is meant to get you in the mood of partying all night. This works with your eye makeup while keeping the rest of the face minimal. Start with the base - concealer, apply a bit extra on your eyelids to make the colour pop. Don't mind going the extra mile and colour blocking your eyes with complementary colours on eyelids and under the eye. Apply nude lipstick and a soft blush to balance your look.
This look is meant to get you in the mood of partying all night. | Pixabay
(Article originally published by N. Lothungbeni Humtsoe) (IANS/ MBI)
Keywords: Celebrity, makeup, Deepika, Jhanavi, Korean, Red Lipstick, Glass Makeup, Pop makeup