Blog

Aims to Empower Women, ‘Pink Healing Hands’ women’s Group Launched in New Delhi on Int’nl Women’s Day

Pink Healing Hands, an all-women group for women was launched on International Women’s Day to celebrate women by Chief Guest, Mr. H. N Sharma, Legal Expert, and Ms. Shabina Khan, founder and entrepreneur at Press Club of India on March 11, 2023.

Mr. Veer Sachin Aadavanshi, Founder Chairman, FFW Group of Company, Prof. Jaseem, Chair Person, Narendra Modi Study Kendra, and Mr. Habib Akhtar, Veteran Journalist were special guests at the program

Founder Ms. Shabina Khan launched the Group to the world and gave an insight into the group’s modus operandi. She said, “The group is bound to empower women in all possible respect from health to self-defense to self-reliance and creating a better world for girls and women. We thrive to make our surroundings better for women.”It’s her Motive is a women’s exclusive event that commits to highlighting and uplift female talent.

She further said, “We feel proud to announce the launch of our latest initiative focused on women’s empowerment, safety, and self-defense. As an organization committed to promoting gender equality and ending violence against women, we believe that every woman should feel safe and confident in her ability to protect herself. Our capabilities begin where your imagination ends. You educate the world if you educate one woman.”

Prof. Jasmen, Chairperson, of Narendra Modi Study Kendra, said, “Through this new program, we will be offering a range of resources and services designed to support women in developing the skills and knowledge they need to stay safe and defend themselves against any potential threats. Our goal is to empower women to take control of their own safety and well-being, and to provide them with the tools they need to succeed.”

The group will be working on four verticals namely Women’s Empowerment, Women’s Self-Defense, Legal Support to Women, and Health and Hygiene Awareness.

Mr. H. N Sharma and Mr. Veer Sachin Aadavanshi promised to provide help and support to the group in all possible ways. At the program, the women and the organizations working for women’s cause were awarded ‘Women Excellence Award2023’ for their excellence and contributions. You educate a woman you educate the world.

AIIMS Director Prof, M Srinivas flags off 8th Edition of Racefor7

New Delhi, March 13, 2023: The Organization for Rare Diseases India (ORDI) hosted its eighth edition of Racefor7® on Sunday to raise awareness about rare diseases in India. The event was flagged off by AIIMS Director Prof, M Srinivas, Chief Guest flagged off the event along with medical doctors from AIIMS and other hospitals. Participants joined the run/walk/bicycle to support the rare diseases cause at the AIIMS campus.

Team ORDI works to connect rare disease patients, policymakers, the medical fraternity, and Health Care Industry through various initiatives to sensitize the public at large to acknowledge rare diseases. A major initiative in this regard is our Annual Awareness Run – RACEFOR7. Race for 7 is an awareness run organized by Organization for Rare Disease India (ORDI) in line with World Rare Diseases Day. Racefor7 symbolically represents the 7000 rare diseases.

Every year ORDI organizes Racefor7®, the largest and longest rare disease awareness campaign in India with support from various Patient Support Groups, Clinical Research, Pharmaceutical, Diagnostic Support Companies, Physicians, Hospitals, Volunteers, and Runners with an objective to raising awareness among Public, Health Care Providers, Policymakers, Patient Organizations, and other stakeholders. As part of Racefor7, short marathons/walk/bicycle of approx. 7 KM are organized across multiple cities in India spread across February and March significantly boosting awareness and education on rare diseases.

Dr. Madhulika Kabra and Dr. Neerja Gupta on behalf of the Division of Genetics, Department of Paediatrics, AIIMS New Delhi comment, “Awareness about Rare diseases and their challenges among the general public is important along with other stakeholders like the medical fraternity, government, Industry, media etc. It is heartening to know that awareness is increasing globally and In India. Events like ORDI- Race for 7 shall make a huge impact that has brought multiple stakeholders together. We at AIIMS feel privileged for hosting this event and thank ORDI for giving us this opportunity and shall be happy to collaborate with ORDI to host this event in future. Our special thanks to all the participants for joining the event and expressing their solidarity to Rare disease patients and caregivers. Declaration and implementation of the rare disease policy by the Government of India is a major step, helping many families with better management of affected individuals. Specific treatment is presently available for about 5% of disorders, treatment being prohibitively expensive for most patients. There is a need to focus on research in the area for therapeutics for rare diseases and drug development in India.”

Speaking about the event, Mr Prasanna Kumar Shirol, Co-founder and Executive Director of ORDI, he, said “It is inspiring to see so many people come out to support the cause of rare diseases. The Rare Diseases community extends its heartfelt appreciation to all the participants.”

“Racefor7 is conceptualized and developed to raise awareness and build an annual Program to engage all the stakeholders concerned with Rare and Genetic Disorders.The 8th Edition focuses on access to treatments and building quality of life for 70 million people affected with Rare Diseases.”

Further, he thanked Government of India and the State Governments for initiating treatments for Rare Diseases patients under National Policy for Rare Diseases, 2021 at the Government Hospitals. He said, “120 patients are getting treated in the first phase and there is long way to go in this journey of treatment, clinical trials, drug discovery and drug development, Insurance, find funding for both medical and non-medical support, continuous therapies, special education, care giving and building Quality of Life for patients and families suffering from Rare Diseases”.

All participants received a Tee Shirt with Bib mentioning a Rare Diseases Name. In addition, a medal and e-certificate were given to the participants along with sumptuous breakfast.

Patient Academy for Innovation and Research with support from BAYER collaborates with local partners to raise mass awareness on Endometriosis, through the ‘EndoRun’

13th March 2023, Delhi, India: In observance of Endometriosis Awareness Month, Patient Academy for Innovation and Research with Support from BAYER commenced the first leg of the EndoRun in Delhi, today. The EndoRun is a mass awareness initiative that will bring together survivors and their families, healthcare providers, researchers, and advocates, to march for a shared cause around Endometriosis. The goal is to raise awareness about endometriosis, spark a national conversation around the condition, and call for greater support and resources for individuals and families affected by it. The awareness initiative saw more than 150 participants from various patient groups.

Endometriosis is a common, chronic, gynecological condition, which affects over 247 million women globally and 42 million women in India1. It is a condition where tissue similar to the lining of the uterus grows outside of the uterus2. Women with endometriosis suffer from chronic pelvic pain, fatigue, depression, and infertility. Diagnosis of the condition is often delayed by 6-10 years, significantly reducing a woman’s overall quality of life. This also impacts academic performance and work productivity, thus causing a large socio-economic burden3. The information on clinical presentation, the severity of the condition and associated risk factors for endometriosis are also very limited in India.

Dr. Ratna Devi, Director Patient Academy for Innovation and Research, said, “It is important to create awareness due to the delay in diagnosis and treatment. Most women live through excruciating pain and other severe symptoms and their voices are unheard or dismissed. Advocating for better diagnosis and early treatment is an urgent need. Women must be provided with a safe space to discuss and support each other through this experience”.

“Endometriosis is a condition that affects millions of women worldwide. With our deep-rooted expertise in women’s health, we are committed to improving the awareness on endometriosis. We are delighted to partner with PAIR and provide support to initiatives that will contribute to help women access better healthcare solutions. Information and communication among patients, and patient’s groups is essential to fast-track the endometriosis diagnosis. At Bayer, our goal is to improve the health outcomes of women through research and development and by introducing new treatment options for diseases including Endometriosis.” says Mr. Deepak Chopra, Business Unit Head, Women’s Health, Bayer Zydus Pharma.

The EndoRun started from Connaught Place in Delhi and was graced by Chief Guest Ms. Suman, an Oscar winner and national president of the Embark Care Foundation along with Dr. Madhu Goel, Associate Director – Obstetrics and Gynaecology at Fortis La femme. Distinguished doctors and other patient support groups rendered support by offering expert guidance on endometriosis.

A coffee table book which is a collection of patient stories that features their journey and diagnosis story was also launched. It is aimed at empowering patients to take the right steps to connect with gynaecologists. The book will equip women to understand the condition through the perspectives of these women. The event also featured interactive sessions like Zumba, which aim to promote a healthy lifestyle among women.

“Through these pan India events, we hope that our efforts during Endometriosis Awareness Month will help break down the stigma surrounding endometriosis and promote greater understanding of the condition. We are committed to empowering those affected by endometriosis through education, advocacy, and support”, added Dr. Devi.

The other phases of the initiative are scheduled to take place on 25th March in Mumbai, 26th March in Pune, 28th March in Hyderabad and will conclude in Kolkata on 2nd April.

Raising awareness to avoid blindness due to Glaucoma – the silent thief of vision

Hyderabad, 13th March 2023: L V Prasad Eye Institute (LVPEI), observes World Glaucoma Week, every year across its network, to bring public focus on this eye disease that can affect both adults and children. World Glaucoma Week is a joint global initiative of the World Glaucoma Association and the World Glaucoma Patients Association.

L V Prasad Eye Institute hosted a Glaucoma Awareness Walk to spread information about the dreaded Glaucoma disease, from LVPEI’s Banjara Hills campus, today. Chief Guest Sailesh Kolanu, Renowned Film Director and Screenwriter and Guest of Honour and Tollywood Actor of Colour Photo movie fame Suhas Pagolu, flagged off the walk. Dr Siddharth Dikshit, Glaucoma Consultant; Dr Sirisha Senthil, Senior Glaucoma Consultant; Dr Anil Kumar Mandal, Senior Glaucoma Consultant, L V Prasad Eye Institute; participated in the walk along with other Doctors, Patients, and Volunteers.

Speaking on the occasion Sailesh Kolanu said, whole heartedly applaud the doctors and medical professionals here for the wonderful work they are doing, day in and day out to ensure that the poorest man can access the best eye care. LV Prasad Eye Institute is acknowledged for its yeoman service. It is very important to be aware of Glaucoma, because it can steal your eyesight before your realise the damage it has done, Therefore it is necessary to undergo an eye check up every year, that way the disease can be detected at an early stage and help prevent the vision loss.

Suhas Pagolu said, till yesterday I wasn’t aware of this scary disease of the eye called Glaucoma and the serious harm it can cause to vision. Also understand that this disease creeps in to our eye without we realising it and the only way we can prevent it is through a regular eye check-up.

Dr Sirisha Senthil, said, there is hardly any awareness about Glaucoma disease, most people express their ignorance about the disease. In India the top most cause of irreversible blindness is Glaucoma. This is one of the most common diseases in people above 40 years of age, one in every ten people either suffer from this disease or are at risk to suffer from the disease. One of the reasons for 90% of the public in India being unaware of this disease is its lack of symptoms. Mostly its detected after the person loses 90% of his sight, but its late by then. There is no treatment for this disease, currently we can only prevent further damage at whatever stage the disease is detected, but can’t restore the lost vision. Therefore we need to create awareness about this disease for people to undergo regular eye check-up. If a family member has Glaucoma it is essential for the entire family to get checked. Even infants can be born with glaucoma, a one day old baby can be diagnosed with Glaucoma. It’s a misconception of Glaucoma being an old age phenomenon, it can be found even in an infant too.

Dr Anil Kumar Mandal said Glaucoma can affect any individual, be it newborn baby, children, adolescents or adults. The detection of the disease should be done as early as possible and treated immediately. It’s a disease that requires life long follow-up after detection and treatment. This walk is being organized to create collective awareness.

As part of the World Glaucoma Week, 12 – 18 March 2023, L V Prasad Eye Institute’s Kallam Anji Reddy Campus in Hyderabad; is organizing a Patient Interactive Forum, in addition to Awareness Walk held today, during the week, to raise awareness about early detection and treatment of vision-threatening Glaucoma eye disease. Patient Interactive Forum is a live patient interactive patient forum in six different languages of Bengali, English, Hindi, Kannada, Odiya and Telugu. It will be held on 15 March 2023 from 3:30 – 4:30 pm through LVPEI’s YouTube channel. People can send in their queries using the below link. These queries will be answered by the LVPEI Glaucoma specialists during the live patient interactive session.

Glaucoma is an eye problem associated with an increase in eye pressure and is characterized by damage to the optic nerve leading to irreversible blindness. It is the most common cause of irreversible vision loss globally. The global estimates predict that the number of patients with glaucoma will rise from 76 million to 111.8 million by 2040, with majority of these patients residing in Africa and Asia. Available statistics indicate that 1.12 crore Indians (4.5% of the Indian population) suffer from glaucoma, including children, of which 11 lakh people have turned blind.

“A person with glaucoma will not have any early symptoms or pain despite the increase of eye pressure till 90% of vision is lost. Vision once lost due to glaucoma cannot be restored, and that is why it is also called the ‘Silent Thief of Vision’. Vision once lost cannot be restored, but an eye specialist with early detection and treatment can help in safeguarding and preserving your remaining vision. Patients who present in early stages have no visual disability and can lead completely normal life. A basic eye examination for glasses (undilated eye examination) cannot detect glaucoma. Only a comprehensive eye examination that includes an eye pressure check, dilated fundus examination and a gonioscopy (in certain cases) can help in detecting glaucoma early,” says Dr Siddharth Dikshit, Glaucoma Consultant, L V Prasad Eye Institute.

Even though 80% of blindness from glaucoma is preventable, almost 7 million people worldwide turn blind due to glaucoma, with 2/3rd of them being women. This is because a whopping 90% of glaucoma cases go undetected, presumably due to a lack of awareness.

“Glaucoma more commonly affects people beyond the age of 40 years, especially those who have high myopia or are diabetic (one in eight people above 40 years of age are at risk for glaucoma). Those having a family history of glaucoma or those who have sustained eye injuries or have undergone eye surgeries are also vulnerable to developing glaucoma. They should get their eyes checked annually to rule out glaucoma” adds Dr Dikshit.

Another word of caution by the doctors is that steroids should be judiciously and only under medical supervision. Excessive use of steroids can also lead to Glaucoma. People for whom it is necessary to use steroids, such as eye drops, inhalers, ointments or tablets, they should also get their eyes checked regularly.

Points to keep in mind:

•  While it is true that people over 40 are at a greater risk of developing open-angle glaucoma, there are other types of Glaucoma (some very severe) that can affect people younger than 40.
•  Even young newborns and infants, due to abnormal eye development, can develop Glaucoma. These children present with large bluish eyes.
•  Can a cataract surgery (to place a lens) restore vision lost due to Glaucoma? Just as a camera whose film (or the 100 megapixel sensor) is damaged, cannot be repaired by changing the lens, an eye with Glaucoma will not benefit with cataract extraction and intraocular lens placement alone.

Treatment

•  Depending on the type, severity and previous history, glaucoma can be treated with medications (usually eye drops), lasers (of various kinds) and surgery, if required
•  The treatment for glaucoma aims at controlling the eye pressure and preventing further vision loss due to glaucoma.
•  Glaucoma surgery is not usually aimed at improving, but preserving the remaining vision.
•  Accompanying cataract surgery, when the eye has cataract, can recover the vision the vision attributable to cataract.