Psychological and Social Implications of Genetic Diseases in India: A Story

 

Looking back to my younger days, I consider myself rude, mischievous, and ill-mannered. On many occasions, I got involved in heated exchanges with friends, relatives, and even strangers — arguments that often ended in manhandling. I always found that my muscle power overpowered others, and I was proud of my strength — a true companion to my victories. Supplementing it with abusive language, I tried to dominate everyone, no matter how dear they were to me or how deeply my words could hurt them.

Like every parent, my parents were worried about my abusive behavior. As an only child, their dreams were closely knit with mine. Disappointed and disheartened, they tried many times to correct me, but their efforts to make me better only seemed to boost my bad manners. I even found a strange excitement in seeing them worry about me.

 

My father was desperate, and as his objections toward me increased, our relationship worsened. Our verbal duels often led to physical confrontations. My father was a strong man who built his family from scratch; though a middle-class man with limited income, his hard work and determination always supported him. I had never seen him fall prey to emotions, but when we fought, I could see tears fill his eyes. When I saw that, a sense of pride or satisfaction spread through my veins — something I am deeply ashamed to admit today. It is a sad reality of my childhood days.

 

One day, I was so agitated with my father that I threw a coconut at him, shouting the most abusive words a son could ever speak to his father. Thankfully, the coconut missed its target.

 

My father stood there motionless for a long moment, then said,

 

“The pain I feel now is not in my body, but in my soul — the pain of absolute inability to guide my own son. You will never understand it unless you become a father yourself and feel the same pain that I am feeling now. And I pray that day never comes to you.”

 

Days passed and years went by. Many good and bad things happened in my life, but my father’s words still haunted my conscience. Yet time is a great healer — I matured, got married, and began leading a respectful life. When I became the proud father of a cute little boy, my joy was boundless. Still, a gentle fear of my father’s words haunted me and gifted many sleepless nights. My father was no longer able to take back his words, and I could only pray to God that they would never come true.

 

Thankfully, God was kind to me. As my child grew, he was deeply attached to me and never spent a minute away from my side. Our bond was so strong that I was certain my father’s curse would never come to pass.

 

But today, as I sit before you, I earnestly pray to God day in and day out —Please, God, let my father’s curse become a reality.  Let my son shout at me, hurl wild words at me, even slap me across the face.  This prayer echoes within me every second of my life, yet God seems indifferent.

 

Perhaps time is taking its revenge — by doing the exact reverse of what my father once said.

 

I was recounting my chilling life experience before a small gathering, with my son sitting beside me, holding my hand tightly.

 

My words choked as I saw him looking at me — confused, as if trying to understand whether I was happy or sad.

 

He suffers from a genetic disorder and lives in a world of his own.

 

From the moment he wakes up until he goes to sleep, he depends on me for everything — every movement, every need, every… every…

 

My voice broke, and I couldn’t finish. Yet the crowd seemed to understand everything.

 

My eyes were wet, but not a single tear fell.

 

Perhaps time has been so cruel to me that even my tears have grown tired — tired of me, and of my life.

 

The crowd listened to me in pin-drop silence — motionless, emotionless. My painful narration did not shock them, for they too shared the same feelings as mine. As we are the parents of children with genetic disorders, and in such lives, it is impossible to predict who suffers more or who suffers less.

 

Ours was a gathering of the same emotions — the emotion of helplessness, grief, and the agony of not being able to do anything for our children. A treacherous fear of the life ahead loomed over us, staring like a witch in the dark. We all stood there, like fawns stranded and surrounded by a pack of wolves — fragile, frightened, and defenseless.

 

“My one and only wish left in life,” another mother whispered, “is to see my little princess die at least a day before I do.”

 

She continued her harrowing story. When a baby girl was born into her family, the whole house was filled with celebration — joy knew no bounds. Her first smile, her first tooth, her first fall, her first crawl, her first steps — we celebrated everything. Almost every day felt like a party at home.

 

The celebration continued for three years, until the day the child began showing symptoms. Happiness slowly gave way to pain. The loved ones who once stood beside us in celebration began to drift away, keeping their distance.

 

“Today,” she said softly, “it’s just the three of us — my husband, my little queen, and me — living together, staring at the reality of our loneliness, utterly confused.

 

She paused, and then continued.

 

We tried every form of treatment, leaving no hospital untouched. From north to south, from Ayurveda to Unani, we explored every path with new hope and final disappointment. In our endless run from hospital to hospital, my husband lost his job. Gradually, my own health deteriorated — breakdowns and seizures became frequent.

 

Today, we are jobless, without income, and stranded in absolute darkness. When I die, who will look after her? She will be at the mercy of others. The truth is, there will be no one to feed her, clean her, or sing her favorite Tamil song — the one that celebrates love and kindness — which she insists I sing to her every day.

 

So, my earnest prayer to God is: ‘Oh God, at least honor our last request and grant justice to my child. Help her to die at least one day before I do.

 

She somehow managed to conclude her story. Thankfully, one tear escaped, defying gravity, from her deeply sunken, dry eyelids.

 

Am I a god? How can a man become a god?

 

There will be many instances when nature turns brutal.

 

You might ask — why blame nature and not God?

 

Because, in my understanding — shaped by the wisdom of my parents, grandparents, and many good-hearted souls — God never makes errors. God is supreme, untouched by mistakes.

 

But nature can falter, and so I lay my accusations before it.

 

Coming back to the subject, then comes the question — how do we respond to nature when it becomes brutal to us?

 

As humans, our strength is limited. We cannot resist or conquer nature.

 

So, do we simply accept it, concede defeat, and learn to live with it?

 

Or — do we rise above being merely human, to become humane?

 

Yes — the only way to overcome nature’s wrath is not by force,

 

but by evolving beyond our humanness and becoming more humane,

 

And in doing so, we touch the realm of the divine and find solutions to the wrath of nature.

 

Aham Brahmasmi — that’s what Hindu philosophy teaches.

 

It means “You are God, and God is within you.”

 

When you do good things in life — for your family and the people around you — you become gracious.

 

When you extend the same kindness to the needy, to those not connected to you in any way, you become magnanimous.

 

And when you support the hapless — those who neither ask for anything nor even know how to ask for help — God is born within you; you become a God.

 

When you have decided to become a god, you are naturally creating a heaven around you — for yourself and for others.

 

Now, the choice is ours — whether we create a heaven of our own, or wait for some divine and heavenly intervention to come and help us.

 

As a father of a differently abled child, I can surely say this: empathy, compassion, humanity, and inclusion cannot be bought in the market or found in temples or churches.

 

They must be created by ourselves.

 

Before becoming a god, let's first become human.

 

Now, let us understand the importance of devising a sustainable plan to rehabilitate people with genetic disorders in India.

 

Statistics suggest that India today has approximately 70 million people suffering from genetic disorders. This means one in every 20 children born in India is affected by some form of genetic disorder.

 

There are no medicines to cure these conditions — rehabilitation is the only way forward.

 

Some children exhibit symptoms from birth, while others show signs only as they grow.

 

The dark side of the story:

 

Many parents either feel ashamed or find it convenient not to tell the world that their child is differently abled.

 

The result is complete isolation — a life kept away from the beauties and wonders of the world. These children are often denied access to public places and social gatherings.

 

Another sad reality is that many of them are subjected to severe beatings and cruelty from others.

 

The saddest part is — these children cannot even understand why they are being beaten or punished every day.

 

Though these medical conditions have no proper medication, physical and occupational therapies can greatly improve their suffering and improve their physical, mental, and emotional conditions.  

 

Therapies, along with social mingling, can greatly impart positive changes.

So, how can we become more compassionate toward individuals with genetic disorders?

 

1. Do Not Shy Away

Never be nervous or shy about declaring your child’s special requirements.

Remember — it is a medical condition, and a progressive society will always support those who need it.

If you find that your society is not supportive, change your society.

Do not waste your time trying to change them — you might lose precious time that could be spent helping your child.

Empathy and support are two crucial elements for your child’s inclusive care.

 

2. Educate Yourself and Others

Understand the disease and its effects thoroughly.

Discuss it openly in public forums and community groups, and spread awareness.

Research shows that children with rare diseases show better improvement when they grow up in loving relationships, a healthy environment, and with positive exposure to the world around them.

 

3. Promote Engagement and Exposure

Do not confine them within closed doors.

Take them outside — travel with them, explore with them.

Let them connect deeply with nature and learn from it.

Nature is a great healer and an even greater physician, offering many remedial benefits that may not be immediately visible to us.

 

4. Share and Learn from Experiences

Your experience is your greatest teacher.

Over the years, you might have gained valuable insights — share them with others so they can use your experience to do better.

Join support groups, interact with fellow parents, and participate in awareness campaigns to foster a stronger, more compassionate community of support.

 

5. Stay Hopeful and Active

The world is changing fast.

Numerous studies are underway to develop medicines that can cure genetic disorders.

There is a real possibility that such breakthroughs will emerge in the near future.

So, do not lose hope. Stay active, aware, and well-informed about the latest developments in this field.

 

6. Support the Parents

Parents of differently abled individuals face several emotional and psychological challenges.

They are often sidelined by society and become silent victims of emotional trauma — what they truly need is your positive support and understanding.

They may also require medical and counselling assistance to manage stress, anxiety, depression, and other mental health concerns.

Your empathy and encouragement can make a world of difference in their journey.

 

7. Ensure Comprehensive Care

Children with genetic disorders require continuous medical care and support, including speech, physical, and occupational therapies.

As a parent, invest time and effort in these interventions — they can bring significant improvements to your child’s development and confidence.

Therapy is not just treatment; it’s a pathway to progress.

 

8. Keep Them Active

Your child needs to stay physically and mentally active.

Otherwise, they may lose the inner spark to fight the disease.

Encourage regular activity, healthy eating, and adequate sleep, as the brain requires more resting time for recovery and growth.

Ensure they drink plenty of water, avoid junk foods, and strictly follow the doctor’s advice.

A healthy routine builds both strength and spirit.

 

Role of Public Organizations and NGOs

 

1. Improve Access to Healthcare

People in rural areas often have limited access to specialized healthcare and support services.

The government and non-governmental organizations must take active steps to provide better access to healthcare for these individuals.

 

2. Address Financial Barriers

Healthcare support systems such as physiotherapy, speech therapy, and occupational therapy can be expensive, with limited insurance coverage.

It is crucial to find ways to make these services more accessible and affordable for all sections of society.

 

3. Increase Public Awareness

There is a lack of awareness about the challenges faced by people with genetic disorders.

Government agencies and NGOs should promote awareness campaigns and encourage public support and inclusion for affected individuals and their families.

 

4. Make Public Spaces Accessible

Public spaces must be made barrier-free and inclusive.

Since some genetic disorders affect mobility, public roads, stations, buildings, and transport systems should be equipped with wheelchair access and other assistive facilities to ensure equal participation.

 

5. Combat Social Stigma and Provide Rehabilitation

People with genetic disorders often face stigma, discrimination, and isolation.

They may also struggle with learning disabilities and employment challenges.

The government should support rehabilitation programs that ensure access to education, skill development, and fair employment opportunities for individuals with genetic conditions.

 

Some important genetic disorders

Here are some important genetic disorders that are relatively common in India:

1     Thalassemia 

Description: A group of inherited blood disorders characterized by the production of abnormal hemoglobin, leading to anemia.

Prevalence: Significant numbers in India, with around 100,000 patients and 10,000 to 12,000 new cases annually.

Symptoms: Severe anemia, fatigue, weakness, and organ damage if untreated.

 

2     Sickle Cell Anemia

Description: A genetic disorder where red blood cells become rigid and shaped like a crescent, leading to blockages in blood flow.

Prevalence: Affects approximately 1.5 million people in India, especially in tribal communities.

Symptoms: Painful episodes, anemia, swelling in hands and feet, and frequent infections.

 

3     Down Syndrome 

Description: A chromosomal disorder caused by the presence of an extra chromosome 21, leading to developmental and physical delays.

Prevalence: Around 30,000 to 35,000 children are born with Down syndrome each year in India.

Symptoms: Intellectual disability, characteristic facial features, and developmental delays.

 

4     Hemophilia

Description: A bleeding disorder where blood does not clot properly due to the deficiency of clotting factors.

Prevalence: Over 20,000 registered cases in India, though the actual number may be higher.

Symptoms: Excessive bleeding, joint pain, and easy bruising.

 

5     Duchenne Muscular Dystrophy (DMD) 

Description: A severe type of muscular dystrophy characterized by progressive muscle degeneration and weakness.

Prevalence: Estimated 5-10 per 100,000 male births.

Symptoms: Progressive muscle weakness, difficulty walking, and eventually loss of mobility.

 

6     Cystic Fibrosis 

Description: A genetic disorder affecting the respiratory and digestive systems, causing thick mucus buildup.

Prevalence: Relatively rare in India but present.

Symptoms: Chronic cough, lung infections, and digestive problems.

 

7     Phenylketonuria (PKU) 

Description: A metabolic disorder where the body cannot break down the amino acid phenylalanine, leading to its accumulation.

Prevalence: Rare, but cases are identified through newborn screening programs.

Symptoms: Intellectual disability, behavioral problems, and skin rashes if untreated.

 

8     Neurofibromatosis 

Description: A genetic disorder causing tumors to grow on nerves and affecting skin pigmentation.

Prevalence: Variable, but cases are found across India.

Symptoms: Skin changes, nerve tumors, and learning disabilities.

 

9     Retinitis Pigmentosa 

Description: A group of genetic disorders causing progressive degeneration of the retina, leading to vision loss.

Prevalence: Cases are seen across India.

Symptoms: Night blindness, loss of peripheral vision, and gradual loss of vision.

 

10     Spinal Muscular Atrophy (SMA) 

Description: A genetic disorder that leads to the progressive loss of motor neurons in the spinal cord.

Prevalence: Not as common, but present in India.

Symptoms: Muscle weakness, difficulty in movement, and respiratory issues.

 

11     Cerebral Palsy (CP) 

Description: Cerebral Palsy (CP) is a group of neurological disorders that affect movement, muscle tone, and motor skills due to brain injury or abnormal brain development. It is one of the most common motor disabilities in childhood that affects 1 in 500 live births in India.

Prevalence: Common in India.

Symptoms: Motor Symptoms: Difficulty with fine and gross motor skills, muscle stiffness or weakness, and problems with balance and coordination.

Other Symptoms: May include seizures, cognitive impairments, vision or hearing problems, and difficulties with speech and swallowing.

 

Conclusion

 

Sometimes, nature may test us; sometimes, it might even be merciless.  But what defines us is how we respond — with empathy, courage, and humanity.  If we can transform pain into purpose and helplessness into healing, then perhaps, in our own small way, we become what the ancients called divine.

 

Always remember — it’s not God who rules the world, but the godliness within you that makes the difference.