One day in the life of Pallavi Rao/ Myasthenia Gravis | PALLAVI RAO | TEDxKNC
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- Опубліковано 31 тра 2024
- Pallavi Rao inspires us through her journey of battling cancer twice, and overcoming the symptoms of Myasthenia Gravis (an autoimmune neuromuscular disorder) by her persistent, never-ending efforts. A former RJ (bumper to bumper, RJ pallu) who lost one of her vocal cords during the treatment of an autoimmune disorder called myasthenia gravis, is currently the Group Head- CSR of Radio Mirchi. She strongly battled Cancer twice though the effects of the same still linger in her life. During the hard times of her treatment, she wrote ‘ICU Love Stories’ where she narrates tales of compassion, peace and love in relationships in ICU. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at www.ted.com/tedx
I know how hard it is to have myasthenia gravis. I also have it for 2 years. Its hard when myasthenia is being flared up by pneumonia. you feel hard to breathe, the eyes droopes more and the muscles gets numb more and more. Stress is uncontrollable too. You get stressed with every pain you feel inside. I was depressed for having so many rare disease and now i have this autoimmune disease. It takes a lot of patience to all those relatives and love ones who are living with myasthenia gravis patients. I hope i can spread awareness about mg and encourage many patients like me to continue living and doing everything they love slowly. I also hope there will be cure with this disease. Im still under observation by my doctors because of some complications with my myasthenia.
Sir my mother treatment is going for 7 years for last 7 year she is fine but now she is getting breathing issue and coughs
Same here my mother got asthama and she having issue of walking problem
@@sudhanshudey4929 ask ur doctor about rituximab injection or plasmapheresis or ivig
I'm now 33 years old and was diagnosed 10 years ago after 2.5 years of being misdiagnosed and spending lots of hours at a psychologist. Getting antidepressants. Guess what? Didn't heal my weaknesses in my legs an arms. At the age of 23 I was not able to get ready for work or after getting ready for I was already exhausted. Today I'm on low medication, but still need to be careful with me and my health.
Best if luck for all, who where diagnosed with MG, too ❤️
Thanks for sharing
Hi can i ask what medicatuons u take and may e supplements. Can u work? Can u go to the gym? Can u have conversatuons without losing your breath? I think i have this. Thanks for any info. Hope you are doing well
Thank you for sharing! I was diagnosed 3 years ago with MG. I have good days and bad. I am still having a difficult time accepting this disease but the more I hear stories like this...the easier it is to accept. Thank you thank you for being brave and lovely.
i also have mg and can relate to you just keep on going it cant take you down all the best
Thank you for speaking up.. I was diagnosed 2 years ago. My life has become darkness after MG. I see double.. my eyelids down ... My tongue are so thick that I can't talk.. m weak all the time.. MG has taken away my happiness & confident😔
I lost everything to MG 20 years ago. Gave up my education, my dream career, and my life. I'm still in denial, it's hard to accept it because I want to do so much. I've been on 4 studies and my newest one is for the leukapheresis. I'm trying to overcome MG and try to live the life that I want.
Don't worry you will be have much better days.. just go with flow ...accept the MG
Thank you for sharing. My father was diagnosed and it is so hard for me to watch him struggle to be the man he always was. Seeing how much it affects him is heartbreaking, because I know what he was capable of. It is not that he isn't capable now, he just doesn't have the strength/energy to do these things. I hope to God for a cure.
I have it as well u sound like me bless ur heart I be so sad
Thanks for the talk. Learning along with a parent who is going through this, big time. Anxious personalities have to learn to manage and calm themselves. ER dr's have to learn it is not only O2 sat levels that give info, but aterial blood gas tests as well, pulmo techs have to learn that 98 percent O2 does not mean mg patients are not having air starvation, physical therapists have to learn the balance of exertion vs. strength training that she alluded to.....it goes on and on.....patients have to lean to manage meds, be your own advocate or family member and find out the latest treatments, they are changing and becoming quite good....not a dr. and I barely know anything, but in this day and age, seems like there should be way more awareness of MG.....
Thank you for speaking up about such serious issue. Respect you and your strength. Thank you,again!
me too 13 years and no one gets it.People tend to get angry when you cant move like they do and you have to cancel things you were looking forward to .I can totally relate to your explanation of mornings.xx
She's so brave!!! thank u for sharing
Iam just 18 and i got mg in 17 😅 it's really hard for me to believe but now i had to change my whole life i was a Karate player in national level my career is nothing now . I wish i could have my old life back
I have MG thank you, you are an inspiration to all of us…
Proud of you ma’am
I am also suffering from myesthenia gravis from 4 years only people who go through this problem can understand what they are going through.
Mohammed Juned Pasha I am also suffering from this disease from seven years when I was selected for bank job that time I diagnosed it I couldn't do work on computer so quit my job now I have lot's of complications because of its I can't work regularly I have losted my seven years now I am very up set what will be do I don't understand
@@NEETUYADAV-me8pv hi this is gnanaprasuna
I am suffering with mystinia Gravies since 25 years
Now i am looking a good doctor fir best treatment
My love has mysthenia geavis & she is a very strong girl, i know very well how strong one should be & the support in india is pethetic even dr are unaware about the treatment, it's about life always in fear
My wife too has kind of been diagnosed with mg. She has had intermittent double vision every few seconds since one year. No other symptoms yet. All achr tests negetive but neuro suspects it's mg. She is 35 I'm 37.
One year of tests and scans and more tests and scan then gp to opto to neuro to opto now back to neuro. 😅
Damn people don't get it. One who suffers knows better. I am suffering since 8 years. It's difficult to accept. But giving up is not the solution
Me too...since 3Jears
RIP Pallavi.
I am late here but thanks for this video. You are very strong and and an inspiration. I am also having MG since 3 yrs now. Its so troublesome to be on medication. I am looking for any alternative treatment may be Ayurveda. Please advise if you’ve yourself or anyone you know with this condition has tried it and was benefitted? I know there is no cure but I still read many articles claiming treatment to be available in Ayurveda for MG which can cure it.
Hi, I am also want to know can Ayurvedic can treat MG.?
Me also suffering with MG since 25 years. I have completed my thmectomy surgery also but no use
Hello everyone, my sister is also suffering. Can we make a group or can do something together so that it can benefit everyone. Please reply.
I also have MG from past 25. Years, just one Suggestion Pranayama and Satvik food helps me alot,. Exercise should be very modrate for patients.. but pranayama did helped me alot ..
@@9755202565
That’s a great in initiative.
Please let me know if you have created this group. I am very interested in joining the same.
It is a hard to still alive this
Right😑
I'M SORRY QUEEN.
MAY YOU GET PEACE🥺❤️
Hiii, Are you a MG Patient?
Me also
This all happened with me always i also have mysthenia gravis at age of 10
Ankit Kumar Kashyap it is must i also have gone through it.. are you the patient of mysthenia gravis ? And when did u detect about mysthenia gravis?
That's very sad. Hold yourself together.
Me not that early. But Fatigue kills you
How did you manage MG?
How do you managed MG ??
@@sarangp6396 good healthy food , exercises ,and yoga trust me it's works like miracle.. and sound rest
Is it true that AnulomVilom pranayam cures any autoImmune disease including MG?
Sorry! Not all diseases get cured fully by that! I have learnt yoga from 4 different schools for years
I was diagnosed 48 years old with mg I wish doctors would tell people the truth about it not one doctor told me I could have a crisis I was hospitalized seven times with crisis is 4 times with a feeding tube one-time intubated 8 weeks ago it took out my thymus gland I feel a hundred percent better it was hard from being normal and then not being normal
Mam I am also suffering from this disease for last 6 months I m 26 years old I m very afraid so plz give me a good doctor
I am also suffering myasthenia gravis form 2012
Dr Nathaniel sase from wanless hospital miraj is Best for it
Where this hospital
Dr. Rohit Bhatia at AIIMS, Delhi
How are you now?
I have been taking the treatment for myasthania for the past 10 years and i am 26 years old boy.. can this disease be cured with exercises, can i go out to any gym ?? Is gym workout suitable for me ??
Ask a doctor
My friend went to the gym and was very fit but started with ocular Myasthenia gravis , which after about three years is now causing problems with swallowing ,and walking when tired . He was told any exercise would make him weaker, which has been happening when he walked too far ,he would sit and sleep anywhere. Now in the evenings he needs a walker to get around the house.Any movement makes you weaker but sleep helps .
With you man!
What medicines you take
@@sarangp6396 Pyridostigmine , with Pro-Banthine (Propantheline bromide).Now also on the steroid Prednisolone. for a limited time.
Gym workouts like weightlifting will make you more weak
Hey pallavi, have you tried full spectrum cannabis oil ?
it is so unbearable and understanding disease as I am suffering from ocular mysthenia gravis
I can understand. Howe did you find?
What medicines do you take note
My wife too is suspected to have ocular mg. Although the achr test came negative 2 days ago. But the doc said after all tests and scans and everything looks perfectly fine but intermittent double vision every few seconds since last 2 years could only mean mg. Just showing seronegative. Started her off with distinon 60mg + 0.5 mg steroids since yesterday. How do you deal with ocular mg personally. Also how old are you and how long have you had it ?
My wife is 36
There’s no age it happens to all ages and genders I believe the classification of age and gender is making it hard to find the illness, people going the doctors for years to find out they have MG.
Exactly. I have 17 when I was diagnosed with MG. I am 23 now
Thanks goodness for the internet. I had to google symptoms, match MG, gave that printout to my dr because he doesn't care to refer me to a specialist but gave me random meds to try out and because he saw my eyes drooping, he refered me to an optometrist for glasses instead. He's no longer my dr.
@@rhim7266 same my doctor referred me to an eye doctor and thank God the eye doctor saw more & refereed me to a neurologist and got diagnosed
I wonder if there's link for mg community? Care to share? Because mg literally makes me deppresed. Of course my family and friends are supportive but having engaged with someone in your shoes really makes a different. My symptom difficulty swallowing, nasal speech (in fact i cant even make a proper sound sometime), dropped eyelid, fatigue. Well mostly on face area. What about others?
@Heaven is My Home for my disease, yes. Prednisolone and others. But for my mental health, not exactly.
@Heaven is My Home i havent. I'm gonna see the doctor this june to talk about it but since corona issue, i'm afraid the surgery may have to wait for a while. I do have the thymus gland (idk if that is the correct name 😅). I am planning to remove it but whenever i think about having surgery, my anxiety increased. You see, my health went downhill everytime i'm anxious. Btw right now, i'm 22 years old. Have you had this surgery before? I heard that not all surgery can improve your disease. Some may even became worse. Hahahaha. I'm not that optimistic thinker as you can see. Anxiety always my buddy, almost like shadow following around. It just...scares me a lot. And i have never been under knife before. This would be my first
@Heaven is My Home how long for your recovery?
After the surgery, dies it feel hurt? I mean physically. Does it hurt really bad?
@Heaven is My Home that is....scary. but eventually its gonna be better right? I mean..you do get better after it right?
Myasthenia gravis
There might not be a cure in allopathy. You can minimize symptoms to a level that you feel normal. 1) Heal your gut 2) Restore your sleep pattern 3) Vitamin D, 4) Vitamin B 5) Daily laughter and exercise like Taichi / qi gong . 6) Regular fasting - 3 days , 7 days , 20 days water diet .
Basically you need to Detox your mind , Body and spirit . and LEARN to relax . Avoid toxic thoughts , toxic environments and toxic people.
Ms Rao has spoken about living with MG and accepting MG , very good .And the world desperately needs to know how to over come MG /defeat MG . You will find these methods in the book "My Myasthania Gravis" by Stephen Lau
I am a MG patient myself so this is like the first hand experience.
All I would say is, DO. NOT FAST. DO NOT DEPRIVE YOUR BODY OF THE ENERGY IT DESPERATELY NEEDS.
Second, AVOID HEAT. IT DEFINITELY FLARES UP THE ANTIBODIES. You can take vitamin D supplements but it would be better if you avoided heat and direct sunlight.
I do not know much about other points stated here so I will not comment on it.
I read this book, and it is very good! Yes, it takes time and commitment to implement the things in the book! Body, soul and spirit!! It's definitely worth the read, thank you!!
Living with myasthenia sucks
Hi Tamanna
Are u from India
Do u have MG
My mother is young and suffering..from it
Right😑