I thank MSSI for giving me a platform to share my story:
I was diagnosed with Multiple Sclerosis in 2011 after a long battle with difficult symptoms of optic neuritis, pain, falls and fatigue. I was in India at the time with my husband and there was little to no active knowledge of MS. The doctors also seemed somewhat afraid to tell my family and me what the news was. The diagnosis was finally made after returning to the UK, and it was perhaps one of the most devastating events of my life.
From being the active and independent professional, mother and wife that I was, I spiralled into a deep depression where I thought this was the end for me. I thought I was being punished for something I might have done in my past life. I felt unwell, weak and a burden on my family despite their efforts to support me as much as possible.
A year after my diagnosis, the one thing that had not changed was my love for music. My family reminded me of how I inspire them. They also reminded me of the lessons I have taught them to overcome hardship with determination. So I worked hard to seek the right kind of help both medically and mentally to bring me back to life.
Today, I continue to travel across the world and run one of the most successful music academies for western music in India. I continue to perform on stage too– singing and playing my guitar and the piano.
While in Hyderabad in 2015, I met Meena Gupta (Charter Chairperson, MSSI) and joined MSSI. This has benefitted me greatly because of the up-to-date information and support I receive and also I have been able to connect with other people living with MS.
In 2018, Meena and Mamta Gupta (Chairperson, MSSI) requested that I perform for World MS day in the city of Hyderabad, India on behalf of MSSI. The event gathered and inspired a large public audience. It also raised awareness of MS to the Indian public. I am an active advocate for MS in India, determined to spread awareness of the disease and the help available.
In 2019, I and my newly formed all-female trio, The 969, performed on World Music Day where we spread the word about MS again particularly in women, and inspiring them to keep on living!
I am grateful to be able to spread the joy of music to everyone; the young and old, sick or healthy. Recently, during the Covid19 lockdown, my daughter and I composed and recorded a song based on my experiences; “TOGETHER”. This song is dedicated to people living with chronic illnesses, particularly MS.
Although no two days are the same with my MS, with some days being harder than others, I will not stop being the active and independent professional, mother and wife that I was, am, and always will be.
YouTube link to the song “Together”; recorded at home during Covid19, stay at home policy. https://www.youtube.com/watch?v=MlTgRmq9QD0
MSSI HYDERABAD CHAPTER and APOLLO HOSPITALS has conducted a symposium on Multiple Sclerosis – Fighting the Invisible
A very interactive session was held with a panel of Expert Doctors, MS persons, Caregivers, Sponsors, Committee members and Well Wishers on 1st March 2020 (Sunday) between 10.30 am to 1 pm at Apollo Hospitals, Jubilee Hills.
A panel of Doctors who addressed the large gathering were:-
- Sudhir Kumar Consultant Neurologist, Apollo Hospitals
- RamMohan Vadapalli Consultant Radiologist, Vijaya Diagnostic Centre
- Sanjay Sinha Consultant Urologist, Apollo Hospitals
- Anirudh Chirania Psychiatrist APOKOS, Apollo Hospitals
- Namita Singh, Neuro Psychologist, Apollo Hospital
The session was extremely interesting and informative. Each query was perfectly answered by the doctors and all the doubts of MSPs were clarified. Few new MS persons were registered.
The event was supported by APOLLO HOSPITALS and NATCO PHARMA followed by delicious Lunch.
Deepthi Neelagiri, an MS Fighter from Hyderabad, participated in the prestigious all-women art exhibition called ‘Art Invasion’ that is aimed at promoting emerging artists in the field of art.
Deepthi, a few years after the diagnosis of MS completed a certificate course in oil painting from JNAFAU and also learnt the techniques in art from Mr.Sayyad Shaiek. She later did a TTC course from Pidilite. Music being her other area of interest, she also completed a four year certificate course in Carnatic music.
“The motivation to see myself as a singer, an artist started during that time when I wanted to add colour to my dull life” Deepthi says. She strongly feels that art and music had helped her cope with her health challenges and also primarily in keeping her mind happy.
Few fellow MSPs from Hyderabad chapter visited the art exhibition to encourage Deepthi for her marvellous work and celebrate the spirit of being ‘Unstoppable”. Also as part of creating MS awareness, MS brochures have been given and ‘Forms of the Formless’ book has been gifted to Mr. Sayyad Shaiek, Contradiction Art Curator.
The Indian Organization for Rare Diseases (I-ORD) was conceived in 2005 and is incorporated as a not-for-profit organization in India and USA. It is the umbrella organization and represents interests of all rare diseases, individual patients, patient support groups, health policy advocates and health care providers for rare diseases. Its primary mission is to create Awareness – Education & Research, Public Policy & Drug Development.
I-ORD conducted ‘World Rare Diseases Day – 2020’ in Hyderabad on February 28th. The health minister of Telangana, Mr. Eatela Rajender was the honourable chief guest for the event. The intent of the conference is to bring diverse issues into focus and improve the quality of life of all the Rare Disease patients. The campaign targets primarily the general public and seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
MSSI Hyderabad chapter received an invitation to participate in the ‘World Rare Disease Day’ event. The Chapter Chairperson Mrs. Meena Gupta and two MSPs attended the conference. Mrs. Meena Gupta in her speech explained briefly about Multiple Sclerosis, its symptoms, how it is caused and diagnosed, and the available treatment options to manage MS.
Mrs Gupta then introduced about MSSI, and how MSSI through its multiple chapters has been working for the welfare of MSPs to address their needs. She briefly spoke about the Hyderabad chapter’s support activities and services offered for MSPs to help manage their MS for a better quality of life.
Medical professionals, patient advocacy groups, patient organizations from all over India have participated in the event and shared their views.
The event provided an opportunity to create good awareness about Multiple Sclerosis to a variety of audience present. Interestingly television media persons came forward to know more about MS and MSSI, and expressed their interest to extend support in their capacity.
MSSI Hyderabad chapter observed INDIA MS DAY by organising the MS WALK on Sunday 2nd February 2020. The Walk was held at Parade Ground, Secunderabad from 7 am onwards. There was a huge gathering of MS persons, caregivers and supporters.
The Chief Guest Mr. Muralidharan, Chairman TMI Group and First Generation Serial Entrepreneur was welcomed by Chairperson MSSI Hyderabad Chapter Mrs. Meena Gupta followed by presenting the memento to Chief Guest by Mrs. Mamta Gupta.
Chief Guest had addressed the gathering and shared his views on the awareness of Multiple Sclerosis and also appreciated the hard work and efforts put forward by Hyderabad Chapter. He also appreciated the IMSD theme – “KNOW MULTIPLE SCLEROSIS”
The program started by a song sung by Youth MS persons led by Hema Gulati our MS person. Full attendance prizes were awarded to 3 MS persons. The walk was flagged off by the Chief Guest Mr. Muralidharan who walked along with us. Everyone walked enthusiastically holding banners, placards, flags and came back to be served with hot breakfast. The red T-shirts worn by the participants attracted many people who enquired about MS and MSSI and pamphlets were distributed.
MSSI Hyderabad Chapter has conducted a session on symptoms and care of eyes of MSPs by Dr.Akshay Badakere, a Consultant Neuro Ophthalmologist from L V Prasad Eye Institute.
A one to one session which was not only interactive, beneficial but informative too. Dr.Akshay spoke about Optic Neuritis and its symptoms, the tests to be performed, the diet to be followed and exercises to be done to keep MS at bay.
MSSI HYDERABAD has arranged a meeting with Dr.Vijay, an experienced Physiotherapist at UCCHVAS NEURO REHAB AND TRANSITIONAL CARE CENTRE to understand the importance of Physiotherapy.
This month MSPs and Caregivers joined together to learn the benefits of Physiotherapy, a treatment to restore, maintain and make the most of a patients mobility, function and well being.
MSPs have learned how Physiotherapy helps to manage MS.
This centre provides various exercise programs and inpatient facilities to make patients functionally active, handle depression and come out of trauma.
Fun and entertainment is the way to come out of daily life stress and routine to try something new and refresh your mind.
It acts as a remedy to enlighten your mood.
What a fantabulous morning at Saptaparini, the morning was filled with joy and fun.
Every attendee had a joyous time and had spent a wonderful time with each other enjoying every moment.
MSPs and caregivers enjoyed tombola, dumbshrads and song played on guitar by one of our MSP member Mrs. Hema Gulati.
Participants and winners were awarded lots of surprise gifts.
I always thank MS Society Hyderabad Chapter for arranging such wonderful and entertaining events.
As we all know that first aid is the first and immediate help given to any person suffering from either a minor or serious illness or injury with care provided to preserve life.
A very interesting and lively session on first aid was conducted by Dr. Rebecca who is an MS fighter and Emergency Physician.
According to her lack of first aid and basic life, support knowledge is what she seeks to correct, knowing that the spate of deaths could have been prevented.
CPR was demonstrated on a dummy to show how life can be saved before help arrives.
MSPs and caregivers were made to do it experimentally as everyone should be aware of such emergencies and the help they can provide to the sufferer.
It was indeed an informative session.
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