Muscular Dystrophy Life

Today's me & wife visited the National Institute for Research in Reproductive Health center at Parel, it's a divion of Genetic Test of Wadia Hospital. Here we got counciling about the DMD and genetic test whichever require and it's a totally free of cost. If anybody can get counciling n testing prior appointment at free of cost. You get more details from their below website

www.nirrh.res.in

https://youtu.be/pZ-4XKgLxeQ

UDID CARD ONLINE APPLY NEW PROCESS DIVYANG VIKLANG HANDICAP CERTIFICATE CARD DOWNLOAD STATUS CHECK click to subscribe : https://www.youtube.com/channel/UCzpk1uVZgod3f5tGrDg7ing?sub_confirmation=1Connect us on facebook : http://facebook.com/swayamdivyangdo...

I request you to please circulate in various groups so that maximum nos of handicapped can take benefit of Jailur Foot at no cost. The camp is from 23/04 to 26/04 at Sivananda Ashram - Ahmedabad .

Niramaya Health Insurance Scheme

An affordable health insurance scheme for Persons with Disabilities covering under National Trust Act 1999. Through this scheme the beneficiaries can avail an insurance coverage up to 1 lakh and it would be renewed every year.

http://swd.kerala.gov.in/scheme-info.php?scheme_id=NjZzVjh1cVIjdnk= #

Social Justice, Kerala Official Website of the Social Justice Department, Government of Kerala

https://www.facebook.com/100089564917902/posts/117201501275347/?mibextid=Nif5oz

For the first time, hundreds of parents from all over India, who’ve been fighting a lonely battle against this dreaded disease, will come together at Jantar Mantar, Delhi to tell you more about our fight against this devastating disease.

Duchenne muscular dystrophy is the most common muscular dystrophy in children. It is a progressive disorder that causes muscles to become weaker over time until it affects the whole body.
Most children don't survive beyond their 20s, there is currently no cure for Duchenne, there is hope – perhaps more now than ever before.

PM Modi's Mann Ki Baat with the Nation, November 2022 During the 95th episode of Mann Ki Baat, Prime Minister Narendra Modi spoke about India's G20 Presidency and preparations around it, the strides in space sec...

किसीं डीएमडी patient को मायोपॅथी टेबल की जरूरत हो तो मेसेज किजीए

ये बताते मुजे खुशी हो रही है कि SEREPTA THERAPEUTIC की दवाई के trail ahmedabad मे शुरू होने जा रहे है
अत: सभी सदस्यों को सूचित किया जाता है की जो बच्चे अभी चल रहे हैं उनकी रिपोर्ट तुरंत ये नंबर पर भेजे क्योंकि Next week registration चालू होगा और उसके तीन या चार महीने बाद trail चालू होगा
केवल registered बच्चो को ही लाभ मिलेगा
Trail के लिए 6 minut walk test पास होना जरूरी है
So जो बच्चे चल रहे हो वो ही केवल रिपोर्ट भेजे
Wheel chair पर बैठे बच्चों के लिए भी दुसरी दवाई आने वाली है
उनके लिए भी जल्द Registration स्टार्ट होगा
धन्यवाद
BAKULESH D NAGAR - 9824168363-TRUSTEE
INDIAN MUSCULAR DYSTROPHY SOCIETY
AHMEDABAD.

Any DMD patient want mayopathy table for treatment. Inbox me

One month ago we visited Dharampur science center n Jubeli Museum in Valsad district with my DMD suffering Child. This post for only information who's suffering from DMD n their parents . That place is organised by state government Gujarat. It's a enjoyable place n you can see their science informative project n Animals , Gardens. You n your child enjoy one day picnic. Am sharing here some snapshot . Family with DMD child cannot go outing regularly , child also boarei g with sitting home. This outing place really enjoyable to DMD family. Most i important thing is it's fees very affordable. You can see their short 3d movies movies on animals and on space science, galaxy.

City's first wheelchair accessible E-Rikshaw gets positive response.
How to book it : Dial dedicated no.9029090880 provide your address and land mark and you will be connected to the e-rikshaw driver who will be inform about expected time to reach your pickup point. Use this facility who needs and dhare as much as possible.
Thanks and take care.

*KINDLY FORWARD TO ALL YOUR KNOWN/UNKNOWN SOURCE*. 👇

How many people say they don't want to drink anything before going to bed because they have to get up during the night?

Something else I didn't know... Why do people have to urinate so much at night?

Response from a heart doctor (cardiologist):

"When you stand upright generally there is swelling in the legs, because gravity keeps water in the lowest part of your body.

Now if you lie down and your lower body (trunk, legs, etc.) is in level with your kidneys, the kidneys remove the water because it's much easier.

That fits the last statement!

I knew we need a minimum of water to flush the toxins out of your body, but this was _news for me!_

Then what's the right time to drink water? Knowing it well enough, is very important.

Words from a heart specialist....!

Drinking water at certain times, maximizes its effects on the body:

1. Two (2) glasses of water after waking up - helps activate the internal organs

2. One (1) glass of water 30 minutes before a meal - helps digestion

3. One (1) glass of water before bathing - helps to lower blood pressure (who knew that ???)

4. One (1) glass of water before bed - can prevent stroke or heart attack (good to know!)

5. In addition, water at bedtime also helps prevent leg cramps at night.

6. The leg muscles look for moisture when they contract and wake you up with a Charlie Horse (calf cramp).

A cardiologist said that if every person sends this message to 10 people, atleast 1 life could possibly be saved!

So, I have already shared this information to this entire group. Many of you might be aware of a few, but may not be all of them!!

Forward this message or otherwise, it your own choice.
But, if done, it can save lives.
👆👍😊🙏🌸

Happy Morning to all
MARCH 6th 2022 - Meeting @ Bangalore - Multidisciplinary clinical team meet
We sincerely hope it could be a fruitful meeting with more information for parent community.

The Priority is to live healthy and to maintain muscle in a healthy way so try to utilise the opportunity provided and this session will be very much helpful to maintain kids with periodic monitoring of health and to balance with proper medication.

So, expecting all your presence on this March 6th 2022 meeting.

Thank you all for your support

V. BHASKAR RAAJAN
PPMD – SOUTH INDIA

A formal invitation to celebrate *Rare Diseases Day*, with your families and children at *Picnic on 27th February 2022 at 11:30 am at Lodhi Garden.* Besides the customary walk in solidarity with Race for 7, we have some exciting games for the families, prizes for the winners, and would also be serving lunch for everyone.
We would be extremely happy and pleased if you could join us in our celebration and be a part of this beautiful Rare Diseases Community.
Looking forward to seeing you.
A small 👍 to confirm your presence would be highly appreciated.
Samir Sethi

On 12/02/2022 from 8pm to 9:30 pm Dr Satish khadilkar Neurologist at Bombay Hosp in Mumbai along with his team of experts in the field of cardiology ,pulmonology , endocrinology and Physiotherapy will host virtual meeting to discuss wholistic issues related to DMD/BMD /MD patients ...Once they share the link and details of the experts with our organisation viz www.ppmdindia org , the same shall be shared on the group ..
In the meantime , they hv suggested that if anyone has any querries related to aforementioned experts the same can be raised here so it can be forwarded to them in advance .....thank you ......PPMD

Neurologist Dr Satish Khadilkar affiliated with Bombay Hosp

Pediatric cardiologist
Dr Srinivas - affiliated with Jupiter Hosp Thane

Endocrinologist
Dr Kanchan Kewalramani - Affiliated with Jupiter Hospital Thane

Pediatric & adult pulmonologist
Dr Nimish shah - Affiliated with Sir HN Reliance Foundation Hospital - Mumbai

Physiotherapist
Dr Amit Dhumale - Affiliated with Jupiter Hospital Thane .

Good morning Sir,

Below given are details to join the session:
*Muscle Disorders Society Programme*
Date: 12th February 2022
Day: Saturday
Time: 8:00 PM India Time
Link: https://zoom.us/j/95470380886

Join our Cloud HD Video Meeting Zoom is the leader in modern enterprise video communications, with an easy, reliable cloud platform for video and audio conferencing, chat, and webinars across mobile, desktop, and room systems. Zoom Rooms is the original software-based conference room solution used around the world in board, confer...

https://www.facebook.com/403564673441938/posts/1354905004974562/?app=fbl

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Approved Treatments for Muscular Dystrophy

There is no cure for any type of muscular dystrophy (MD), but various medications and therapies can help manage symptoms or slow the progression of the disease. Many therapies are specific to one type of dystrophy. Some of the treatments approved to treat MD are summarized below.

Corticosteroids

Patients with MD are often prescribed corticosteroids, also called glucocorticoids, which may preserve muscle tissue by reducing both inflammation and immune system attacks on those tissues. They also may speed up the processes that are involved in repairing cell membranes. There are many types of corticosteroids that may be prescribed for MD.

Emflaza

Emflaza (deflazacort) is a therapy to treat Duchenne muscular dystrophy (DMD) in patients 2 or older, regardless of disease-causing genetic mutation. Emflaza is a pro-drug, meaning that the therapy must be metabolized in the body into its active form. It contains a pro-corticosteroid, which, once metabolized, becomes a corticosteroid. Once metabolized to its active form, Emflaza acts to suppress the immune system.

LEARN MORE

Prednisone

Prednisone is a synthetic corticosteroid that is generally prescribed to delay the progression of muscle weakness in muscular dystrophy patients. It mimics the action of a naturally occurring corticosteroid called cortisol, which is produced by the adrenal glands. Prednisone is prescribed for its anti-inflammatory properties, and in the case of MD, its long-term use can delay the progression of muscle weakness.

LEARN MORE

Exon-skipping Therapies

Exon skipping is a treatment approach for people whose Duchenne muscular dystrophy is due to certain mutations in its causative gene. Exon skipping works like a molecular patch, so that the DMD gene can produce a shorter version of the dystrophin protein to help protect and maintain the strength of muscle fibers.

Amondys 45

Amondys 45 (casimersen) is a treatment for DMD patients w

Approved Treatments for Muscular Dystrophy

There is no cure for any type of muscular dystrophy (MD), but various medications and therapies can help manage symptoms or slow the progression of the disease. Many therapies are specific to one type of dystrophy. Some of the treatments approved to treat MD are summarized below.

Corticosteroids

Patients with MD are often prescribed corticosteroids, also called glucocorticoids, which may preserve muscle tissue by reducing both inflammation and immune system attacks on those tissues. They also may speed up the processes that are involved in repairing cell membranes. There are many types of corticosteroids that may be prescribed for MD.
Learn more....https://musculardystrophynews.com/emflaza-deflazacort-duchenne-muscular-dystrophy/

Emflaza

Emflaza (deflazacort) is a therapy to treat Duchenne muscular dystrophy (DMD) in patients 2 or older, regardless of disease-causing genetic mutation. Emflaza is a pro-drug, meaning that the therapy must be metabolized in the body into its active form. It contains a pro-corticosteroid, which, once metabolized, becomes a corticosteroid. Once metabolized to its active form, Emflaza acts to suppress the immune system.

Prednisone

Prednisone is a synthetic corticosteroid that is generally prescribed to delay the progression of muscle weakness in muscular dystrophy patients. It mimics the action of a naturally occurring corticosteroid called cortisol, which is produced by the adrenal glands. Prednisone is prescribed for its anti-inflammatory properties, and in the case of MD, its long-term use can delay the progression of muscle weakness.

Emflaza (Deflazacort) Emflaza (deflazacort), originally developed by Marathon Pharmaceuticals and later acquired by PTC Therapeutics), is a therapy to treat Duchenne muscular dystrophy (DMD) in patients, 2 or older, regardless of disease-causing genetic mutation. Emflaza has been approved by the U.S. Food and Drug...

My Parents Have Helped Me Overcome Duchenne MD A 7-mile hike with a 1,000-foot elevation gain was on the schedule for our second day of camping at Point Mugu State Park near Malibu, California. I was with our small Boy Scout Troop 911, which operated out of my elementary school in Huntington Beach. It was a bonding experience for the dads...

Mayopathy table for DMD treatment. Used for treatment for Stretching legs and feet keeps straight. Using this daily 1 hour exercise DMD patient will maintain body posture in good condition. If any body want this pls inbox message me.

Hi to all my followers,
Now a days most of us are facing a problem about climbeing of staircase with wheel chair if we live in society whether absence of lift n not working of lifts. Any body group have a solution please share with this through this page to help others.

Thank you.

To all my page followers,
May the brightness of *NewYear* fill your life, heart and soul with positivity and eternal joy….
Wishing You & Your family a Beautiful Year Ahead.
*Happy New Year*

National Council of Educational Research and Training - NCERT Official page- National Council of Educational Research and Training (NCERT), MoE

Muscular Dystrophy Family - INDIA Non-profit organisation

UDID enrolment help:
Govt of India has launched a Central portal for registration and issuing of I cards for all people with Special needs www.swavalmbancard.gov.in We are here to help you enrol for the same. Please call or WhatsApp 9810990013 for details.

Above number if Avneet Ma'am.
She can help us out with 3 things as of now :
1) For those who are facing registering issues on the swavalamban website as many patients/parents were facing issues with uploading information.
2) For those who have already registered and got an enrolment number, but not UDID, can talk to her and forwards their enrolment number along with any previous Disability certificate.
3) For those who are stuck up in the process at any step and not received their UDID

www.swavalmbancard.gov.in