If you’ve just googled “Can DMD be cured?” – take a deep breath. We know that’s probably the question keeping you up at night, making your heart race every time you see a new research headline.
So let’s cut to the chase – while there isn’t a complete cure yet, DMD treatment options have evolved significantly over the years. While Duchenne muscular dystrophy’s new treatment research continues to advance, let’s explore the current approaches that are helping DMD warriors every single day!
Table of Contents
What is DMD?
But before diving into Duchenne treatment options, let’s understand what we’re dealing with. DMD is a progressive muscle depleting disorder that was identified by a French physician.
Although the disorder was identified in the late 19th century, it is only now that we have treatments like Duchenne muscular dystrophy gene therapy made available.
This treatment has been making headlines with its potential, but it comes with astronomical price tags that could make even a millionaire’s wallet feel light.
But hey, while gene therapy and exon-skipping are stealing all the spotlight, there’s a whole world of other treatment options that deserve some attention.
If you want to know about exon-skipping and gene replacement, therapy please check out our previous blog. So let’s take a look into what we – Indian families can do while figuring out how to deal with the incredibly high treatment cost.
Living with Duchenne muscular dystrophy (DMD) presents unique challenges, this topic has also been portrayed brilliantly by some directors and producers who wanted to portray the struggles and challenges of Duchenne muscular dystrophy (DMD) boys and how it affects the individual and their parents.
We have covered 4 of such movies on DMD, so make sure to check it out.
Getting back to DMD – understanding the condition and available treatment is important. Before diving into treatment options, let’s understand what causes Duchenne Muscular Dystrophy (DMD) and how it’s diagnosed.
What Causes Duchenne Muscular Dystrophy (DMD)?
Duchenne Muscular Dystrophy (DMD) is caused by a genetic mutation affecting the production of dystrophin, a protein crucial for the muscle to function.
How is Duchenne Muscular Dystrophy (DMD) diagnosed?
Doctors typically use a combination of genetic testing, muscle biopsies, and clinical observations of Duchenne muscular dystrophy symptoms, which include:
- That adorable waddle walk (technically called a Gowers’ gait).
- Taking a bit longer to start walking than other kids.
- Those surprisingly buff-looking calf muscles (superhero calves, as some parents call them!).
- The “I’d rather not” approach to running and jumping.
- The creative ways of getting up from the floor (we call it the “climbing up themselves” move).
Diagnosing Duchenne Muscular Dystrophy (DMD) often starts with a parent or doctor noticing something different – maybe a child is having trouble running, climbing stairs, or keeping up with their friends. It’s a moment that can feel confusing, leading to questions and, sometimes, worry.
A blood test is usually the first step, checking for elevated levels of creatine kinase (CK), a sign of muscle damage. From there, genetic testing helps confirm if there’s a mutation in the dystrophin gene, which causes the condition. In some cases, doctors may recommend a muscle biopsy for more answers.
While researchers work on Duchenne muscular dystrophy’s new treatment breakthroughs, there’s a whole world of proven DMD treatment approaches that deserve attention. From physiotherapy to respiratory care, these interventions form the backbone of current Duchenne treatment.
Physiotherapy For DMD
First things first – physiotherapy is like that reliable friend who’s always got your back. It’s not just about moving muscles, it’s about keeping them as strong and flexible as possible for as long as possible.
It is a drug-free treatment option in which a physiotherapist uses movements, massage, and exercises to improve the musculoskeletal system.
What is the Musculoskeletal System?
The body’s system of bones, muscles, tendons, ligaments, joints, and cartilage that gives the body structure, posture, and the ability to move is called the Musculoskeletal System.
It can be used as a standalone or combined treatment option to enhance the recovery of the damaged parts of the musculoskeletal system.
How Physiotherapy Works?
When you first step into a physiotherapy centre for Duchenne Muscular Dystrophy (DMD), here’s what typically happens:
- Initial Assessment (Week 1-2):
- The physiotherapist conducts a detailed muscle strength assessment,
- They measure joint ranges and flexibility,
- Respiratory function tests are performed.
- Creating a Customized Program (Week 2-3):
- Based on the assessment, a personalised exercise routine is developed.
- The program typically includes a mix of:
- Gentle stretching exercises.
- Range-of-motion activities.
- Respiratory exercises.
- Core strengthening techniques.
- Balance and coordination activities.
- Regular Sessions (Ongoing):
- Usually 2-3 sessions per week.
- Each session lasts 45-60 minutes.
- Progress is monitored and documented.
- Exercises are modified as needed.
Exercises / Key Components of Duchenne Muscular Dystrophy (DMD) Physiotherapy
Stretching Exercises
- Morning and evening stretching routines.
- Focus on the ankle, knee, and hip joints.
- Gentle upper body stretches.
- Special attention to tight muscles.
Respiratory Physiotherapy
- Diaphragmatic breathing exercises.
- Chest expansion techniques.
- Airway clearance methods.
- Cough strengthening exercises.
Aquatic Therapy
- Low-impact exercises in water.
- Resistance training without strain.
- Improved cardiovascular fitness.
- Enhanced muscle strength.
Posture Management
- Proper sitting and standing techniques.
- Use of supportive equipment.
- Regular position changes.
- Spine alignment exercises.
The best part? Many Indian hospitals and therapy centres offer these services at relatively affordable rates, and some NGOs even provide subsidised or free physiotherapy sessions.
Most major cities now have specialised neuromuscular physiotherapy centres where therapists understand the unique challenges of Duchenne Muscular Dystrophy (DMD).
Corticosteroids For DMD
Now, let’s talk about corticosteroids (fast-acting anti-inflammatory medication) – the Original superheroes of Duchenne Muscular Dystrophy (DMD) treatment. Corticosteroids like Prednisolone and Deflazacort are widely available in India and have been showing promising results for the past 2 decades. They help with:
- Slowing down muscle weakness progression.
- Keeping our Duchenne Muscular Dystrophy (DMD) boys walking for longer.
- Maintaining better lung function.
- Reducing the risk of scoliosis.
- Preserving upper limb function.
Yes, they come with their own set of side effects, but proper monitoring and dose management by experienced doctors can help keep these under control. Many Indian hospitals now offer management programs that include:
- Regular monitoring of growth and development.
- Bone density screenings.
- Weight management support.
- Dietary guidance to minimise side effects.
- Regular blood work to ensure safety.
- Psychological support to manage mood-related effects.
This treatment is typically initiated during the “plateau phase,” which usually occurs between the ages of 4 and 6 when motor progress ceases.
Many physicians now continue treatment even after Duchenne Muscular Dystrophy (DMD) boys lose the ability to walk, aiming to preserve upper extremity function, slow the progression of scoliosis (spine curve), and reduce the decline in respiratory and cardiac function.
Note: The recommended prednisone dose is 0.75 mg/kg per day. Doses below 0.3 mg/kg are less effective, and daily doses appear more beneficial than alternate-day dosing. Check with a physician for dosage for individual cases.
Occupational Therapy
They can:
- Suggest modifications to your home that make it more accessible to Duchenne Muscular Dystrophy (DMD) boys.
- Recommend and train in the use of assistive devices.
- Help Duchenne Muscular Dystrophy (DMD) boys to attend school and study.
- Help maintain independence in daily activities.
- Provide guidance on sports and recreation.
Many Indian hospitals now have dedicated occupational therapy departments, and the costs are usually manageable for most families. Some therapists even offer home visits to assess and suggest modifications in the actual living environment.
One prime example of occupational therapy is in the movie called – ‘A Space in Time’
Respiratory Care
Improving Duchenne Muscular Dystrophy (DMD) boys’ breathing issues is crucial and it’s an area where India has made significant strides. You can access:
- Regular lung function testing.
- Cough assist devices.
- Breathing exercises and techniques.
- Chest physiotherapy.
- Sleep studies to monitor nighttime breathing.
- Training in airway clearance techniques.
Many centres now also provide respiratory training for families like:
Medical colleges:
- Sri Ramachandra Medical College (Chennai).
- Christian Medical College (Vellore).
- NIZAM’S Institute of Medical Sciences (Telangana).
- Amrita Institute of Medical Sciences (Kerala).
Universities:
- Rajiv Gandhi University of Health Sciences (Karnataka): Offers respiratory care technology programs.
- Symbiosis International University (Pune): Offers respiratory therapy training.
Cardiac Care – To Keep The Heart Strong
Here’s something your cardiologist wants you to know – regular heart monitoring is non-negotiable. The good news? India has some excellent cardiac care facilities offering:
- Regular ECGs and echocardiograms (an ultrasound test),
- Cardiac medications,
- Holter monitoring (The device that records your heart’s electrical activity for a period of time).
Nutritional Support
Now, this is something you can start right away! A proper diet can make a huge difference. Indian nutritionists specialising in Duchenne Muscular Dystrophy (DMD) can help with the following:
- Customised diet plans that support muscle health,
- Weight management,
- Supplement (Vitamin D).
The best part? Many of these dietary modifications can be achieved using readily available Indian ingredients and traditional cooking methods like:
- Lots of fruits and vegetables, such as carrots, tomatoes, oranges, and strawberries, are essential vitamins and fibre.
- Incorporate healthy fats into your diet with options like avocado, olive oil, and nuts.
- Whole grains, including brown rice or whole-grain bread, to boost fibre and energy.
- Calcium-rich foods like low-fat dairy products and leafy greens such as kale and spinach support bone health.
In Duchenne Muscular Dystrophy (DMD) boys, the risk of fractures in the long bones and spine is noticeable. This heightened risk is due to several factors – reduced mobility leading to decreased bone mineral density, the increased likelihood of osteoporosis as a side effect of prolonged corticosteroid use, and low vitamin D levels, likely resulting from limited sunlight exposure.
To reduce these risks, maintaining physical activity and ensuring adequate dietary intake of calcium and vitamin D are strongly recommended.
Note: Vitamin D supplementation is recommended for patients with confirmed vitamin D deficiency, defined as serum 25-hydroxyvitamin D levels below 50 mg/ml. Check with a physician for dosage for individual cases.
Alternative Therapy – The Indian Touch
Let’s not forget our rich traditional medical heritage. While these should always be used in consultation with your primary doctor, many families have found benefits in:
- Yoga adaptations for flexibility and breathing.
- Meditation techniques for mental health.
- Traditional Indian massage.
- Herbal supplements (with medical supervision).
Some Ayurvedic practitioners suggest treatments that help manage symptoms or provide supportive care, such as:
- Abhyanga (therapeutic massage) to help with muscle stiffness and circulation.
- Specific herbs like Ashwagandha for strength.
You’re Not Alone
Here’s something that doesn’t cost a penny but is worth its weight in gold – support groups! India has several Duchenne Muscular Dystrophy (DMD) support groups and organisations. Some of them are:
1. .Dystrophy Annihilation Research Trust (DART) India
Address: 262/D, 14th Cross Road, Dollars Colony
Bengaluru, Karnataka 560094, India
Phone: + 91 80 23412725, +91 9980759881
Email ID: [email protected]
2. Duchenne Muscular Dystrophy (DMD) India Foundation
Address: Core 4-B, 4th Floor, India Habitat Centre, Lodhi Road, New Delhi – 110003
Phone: 011-46541500 and 011-46021281
Email ID: [email protected]
They provide:
- Guidance on how to access government schemes.
- Emotional support and counselling.
Managing the Cost Factor
While these types of treatment are significantly more affordable than gene replacement therapy, they still come with costs. Here’s the good news:
While others focus solely on big treatment, we at ImpactGuru understand that a Duchenne Muscular Dystrophy (DMD) warrior’s journey is made up of countless small battles. Our platform provides:
- Dedicated campaign managers who understand Duchenne Muscular Dystrophy (DMD).
- Social media exposure.
- Compelling visual storytelling.
- Connecting with potential donors globally.
- Ensuring transparent fund management.
- Providing real-time updates to donors.
The Future of Duchenne Muscular Dystrophy (DMD) Care in India
While we all hope for the day these million-dollar treatment become accessible to everyone, it’s important to remember that these alternative approaches can significantly improve Duchenne Muscular Dystrophy (DMD) boys’ quality of life.
Remember, every Duchenne Muscular Dystrophy (DMD) warrior’s journey is unique, and what works for one might not work for another.
So, while the world keeps talking about those headline-grabbing expensive treatment, you can start right now with these alternatives.
Whether through traditional treatment, crowdfunding or a combination of both, there’s always a path forward. Keep fighting, warriors! And remember – while gene therapy might cost the moon, there are still plenty of stars within reach.
Sources
Duchenne Muscular Dystrophy (DMD)
Drug treatment of Duchenne muscular dystrophy: available evidence and perspectives
