ENDOGAMY // RARE GENETIC DISEASES ARE NOT SO RARE IN INDIA

 Vaishnavi Chandrasekhar writes in the Times of India of 31st August 2025.

Endogamy is the custom of marrying only within the limits of local community, clan or tribe. Endogamy means you could inherit the same piece of DNA from your parents, because there are relationships on both sides of your family. In a recent study of 2700 supposedly unrelated Indians, every individual had at least one, fourth degree cousin. It is like consanguinity but at a longer time scale. When the relationship is within three or four generations it is called consanguinity. If it is deeper in time it is called founder events.

Research suggests, ancient Indians transformed themselves from a freely mixing population - a brew of indigenous hunter gatherers, farmers from present day Iran, and Steppe pastoralists (Steppe pastrolists were nomadic groups who lived on Eurasian steppe) - to a more endogamous one, marrying within communities and castes. Over time, this reduced genetic diversity of groups with a small number of founders, raising the chance of rare disorders.

Our genetic health risks are shaped by our identity. We all carry two copies of each gene, one from each parent. Alone, it may have no impact - it remains 'recessive' (expressed in offspring only) or hidden. But if both parents carry the mutation, the child has a one - in - four chance of inheriting both copies and developing the disease. Most people know that marrying close relatives, or consanguinity, can increase recessive risks in the offspring. But endogamy can do the same, especially in smaller communities. 

When people are made aware of  their predisposition, their disorders could be diagnosed and treated quickly and even its early onset could be delayed by the doctors. 

It has been observed that in certain South Indian communities, some new borns do not live beyond a few months  due to rare genetic disorders. The disease remains hidden because no one knows such a disease is there as the children do not survive. 

There is hope, as screening the whole community for such disease carrying variants had helped a pregnant woman who had lost two babies, give birth to a normal baby free of the disease carrying variant.

All it needs is spreading the awareness in such communities so that the occurence of rare genetic diseases could be eliminated.

FEEDBACK

I wrote to an office I deal with for my needs.

 I have nothing against you or anyone there or the organisation

Feedbacks are given for straightening out glitches.

Easiest  is to severe relationships.

One has enough choices.

But as I said one never forgets the one who stood with him at his adversities.

And he never forgets the one who forsook him.

Like it or not everyone is a bureaucrat - a file pusher. Don't ever be a bureaucrat who hides behind statutes, mandates and is  linear in his approach.

The law provides flexibility. It provides elasticity. Never violate rules. But never implement them with a sledgehammer. 

If you do that you'll be the loser.

Discretion has a wider perspective. Everyone has that. Employment of discretion without any selfgain, the management expects and respects.

They are very clever. They won't issue any written instruction. But they'd assess you through your demeanour  and your actions.

I might have gone off the tangent. 

Thought I had to share

OPEN HEART SURGERY

 Giji Mathew

Accounts Clerk

KUTSeminary Kannammoola Trivandrum 

Giji stood there erect in his cubicle on the 14th of July 2025 as the Treasurer left for lunch. Lean and without an inch of flab, he looked perfectly healthy. In the afternoon, the Principal asked him to furnish certain urgent data. He had collated that.

The next morning, on the 15th, Giji rings up the Treasurer and tells him he would be on leave that day. Giji normally doesnot avail leave. The Treasurer carried on with the operations. In the afternoon, Giji rings up the Treasurer again. He tells him that he is at the Cosmopolitan Hospital where they are going to move him to the ICU. It was a shock. Giji couldn't carry on with the conversation. His wife takes over. She tells Giji had a pain on the left arm  and he had vomitted after his breakfast that morning. They had taken an Uber to reach the hospital.

According to the doctors there, Giji had a heart attack nearly 80 hours ago and the  current discomfiture was due to that. Giji couldn't believe it. Two days later they took him in for an Angiogram. But they didnot proceed. They said he had three blocks and he required open heart bypass surgery. The surgeon told them the heart attack was not 80 hours old, but around 10 years old. Giji could not recall any such event in his life till then.

Giji was shifted to KIMS.

He was operated upon on the 23rd. He was discharged on 30th July 2025.

It's a painful grind now.

Giji is around 45. His wife had recently joined Loyola as a Hindi teacher.

He belongs to Pampady. Son of an upright CSI Church Worker known as Mathai Upadeshi, Giji excels his father. Incidentally, both his parents are no more.

At the KUTS the accounts revolved around him. He worked hard. He never sought any favour from anyone. He never talked much. His work did the talking for him. He was always receptive.

Now that he is convalescing KUTS is eagerly looking for his return hale and hearty.

These days it turns out that to live is costly. 

Treatment at KIMS too is. Not rich, Giji has borrowed heavily to pay off the hospital expenses. 

But he is sanguine he could repay all that when he is up and about.

Giji's people did make a few consultations elsewhere before deciding to go in for surgery at KIMS.

The advice is an eye opener. In many hospitals, the surgery could be put through only after two weeks. The waiting list was pretty long.  But they were in unison that in consideration of the young age of the patient, surgery should not be delayed at all. They were further told that if it had been  an older person two weeks' delay would not have been that crucial. 

I leave it to the reader to decipher that.

SHOCKING FINALE

 

Dr.M.C.Thomas  was eighty two. He was a Physician. He was committed. He was dedicated.  He was much in demand.  He was attending to his patients  in three hospitals in and around Muvattupuzha even at this age.

Twenty years ago, he had experienced an excruciating  pain radiating from his left shoulder down the left arm. Being a doctor helped. He understood it was a cardiac issue that called for immediate attention.  He advised his wife to call for 108 ambulance. The shift to the hospital was quick. That saved his life.

At the hospital, investigations revealed he had to be put through open  heart surgery for a bypass. The surgery was a success. But the recuperation took long. He had to quarrantine himself for three months to avoid the onset of any infection. Six months later, he was back to normal. He went on with life at the pace he had set himself upon, before the cardiac ailment visited him.

As time progressed, his son, Sachin Thomas, had migrated to Dublin, Ireland. He too was  a Physician.  After a few years,  Sachin fell in love with a lady doctor, Meera,  from Ernakulam. She was a general surgeon. The marriage took place at Muvattupuzha.

Life went on sedately at both Kavana, Muvattupuzha  and Ireland. There were intermittent visits to Dublin. Sachin and his family were home for three weeks every year.

Though Dr.Thomas’s wife, Sarayu, was a post graduate in Commerce, she had preferred to remain a home maker  as she felt two busy people in varied professions at home would not be conducive to a happy married life. Dr. Thomas never insisted that Sarayu should hunt for a job.

But he was adamant that Sarayu should have a social life of her own. He encouraged her to associate herself with all the activities at their Church. It was a great  advantage to her that she knew driving. In fact , the first thing Dr.Thomas did after their marriage was to teach Sarayu to drive. Sarayu was a good singer too. She enthralled the audience  with her singing in the programmes at the Church.

Though doctors had barred Dr.Thomas from drinks and alcohol ten years after he had undergone the open heart surgery, DrThomas never paid heed to that. He had gone on with his driving and his customery nightcaps. Sarayu never interfered even though she had her own reservations.

Dr.Thomas was a jolly good personality. He would help anyone in need. He was never avaricious. He was an active member of the Rotary Club, Muvattupuzha. In the past ten years there had been occasions when he was seriously ill. Though the doctors would suggest ICU care, he dissuaded them from doing that.

It was a Wednesday. Sarayu had been scheduled to perform at the Parish Hall of the St James Church at Perumbavoor  along with a group of singers from their church.  Dr. Thomas dropped her off at the KSRTC bus station at Muvattupuzha at around 9.00am for her onward journey.  It was a fifteen miniutes’ drive from their residence at Kavana.

Dr.Thomas, on the way back had stopped at the Indian Coffee House at Muvattupuzha for his breakfast. He had always relished their Puree Masala Coffee combination.

Back at his residence, he swiched on the TV for a while and read the newspapers. It was noon by then. Since Sarayu wouldn’t be back for lunch, Dr.Thomas had ordered Prawn noodles – his favourite – for lunch through Swiggy. It was delivered in time.  Though alone, Dr.Thomas did enjoy his lunch.

The lunch over, before  his siesta, he went over to the Kennel  to play with his dogs. He had loved them very much. They too had always loved their moments with him.

Dr.Thomas had an aquarium close to the Kennel. There were rare fishes  in it. He enjoyed to be with the fishes everyday after his lunch. He would talk to them. He did not refrain.

Nobody knew what happened afterwards.

When Sarayu returned, the front door was ajar. She stepped in. She couldn’t find Dr.Thomas anywhere in the house.

Then she found him sitting on a chair adjacent to the Kennel. His head was tilted backwards. It was scary. While one hand seemed caressing the pet dog, the other hand was pressing his chest.

Dr.M.C.Thomas was no longer alive.

He was dead.

TO & FROM

Let me relate quite an interesting anecdote.

I work as a Cashier in a Residential School.

It happened yesterday.

Can't remember the student's name. He came yesterday with two bills. 3400. Countersigned by a teacher. 2750 puffs. 650 something else. I jocularly asked  who ate them all up. He said there was some activity involving the students. They were served snacks. He said the teacher had asked him to dip into mess funds for that. He was in charge of the mess for the month.

He asked me if there was any chance for its reimbursement. 

I said it was wrong to mix up mess funds with other expenses.

But I asked him to write everything that he had explained on a piece of paper, obtain approvals from both the teacher and the head of the institution and once it was done   the expenses could be reimbursed. I had told him if the requirement was complied with   it would be paid that day itself.

Today he brought it to me before it was  submitted to the head of the institution.

The letter format to me was incorrect. It began with 'To'and then 'From' instead of the usual 'From'  and 'To,' order I had been familiar with.

When I pointed it out he said the Superintendent had taught them to do it like that. He added they were all doing it that way now. I replied they should go by what the Superintendent had  taught as he was the  next in line to the head of the  institution in academics and the students never must deviate from the Superintendent's  views

However,  I reminded him that when he brought  it to me it had to be in the correct format. I showed him a  sample and advised him to keep a photo of it.

He came back in half an hour, in the format I had suggested. 

The amount 3400 was paid at once.

As I had stated earlier it was quite interesting

NO SAFETY ANYWHERE

 RENDEZVOUS -  When death grazed and left me to live

It was Tuesday, the 26th March 2002. The time was 6.55 PM. Christ Church, Palayam, Trivandrum which usually overflow with worshippers each time a worship is on, was unusually thin in attendance. Perhaps it was a working day that had turned the believers off. Or perhaps the fact that it was a special service in the Passion Week and that it was in the evening determined that it did not draw the usual crowd. The Choir was notable with its absence. Even the organist was not there to provide the familiar ambience. The Priest (Achen) stood at the top of the aisle and not at the altar. The previous Sunday was Palm Sunday. Achen had announced the programme for the Passion Week. When I heard that there would be Services in the evening on Monday, Tuesday, Wednesday and Maundy Thursday, I had made up my mind to attend the service on Maundy Thursday and leave aside the services on the other days, as it was difficult to attend both the office and the church on all those days.

Ashwin, my younger son, as we had been passing by the church in the evening on Monday asked me what was happening in the church that day. The lights were on. I replied that as it was the Passion Week, the church would have special worships all through the week. The next day as I was about to leave for the office, Ashwin asked me about the worships on Passion Week and its significance. Reversing my earlier decision not to attend the church I told him that we would all go together to the church that day. We agreed to converge there in the evening.

Lila, my wife, was waiting for me at the church as I reached there. We were too early. We shared a few biscuits she had with her. The church was vacant when we made our entry. We were the sole occupants. Taking aisle seats at the head of adjacent rows for men and women we positioned ourselves at the middle. The aisle kept us apart. It was quite unusual as we had never taken those seats ever before. Later, we found to our surprise that both of us had a look at the tombs in the cemetery there as we entered the church. It crossed our minds that here was where we would end up one day. Further, during the course of the worship I had a cursory glance at all the fans in the church and it passed through my mind that the church had a mix of ancient and modern fans. Lila revealed that she had experienced apprehensions and dark forebodings with ominous designs welling up in her mind that evening as the worship progressed. She recollected that she had noticed a fan wobbling as it revolved the previous Sunday.

Christ Church and the Achens are well known for punctuality. The worship always begins at the appointed time, no matter the attendance. Rev. Shajan Idiculla began the worship at 6.30 PM sharp. The sequence of songs, prayers and readings from the Bible went on. Despite the thin attendance, I counted around one hundred worshippers in the church. The gentleman in front, Mr. Koshy Abraham was leading the songs. It was
6.55 PM. The congregation was on its feet singing together.

It all happened in a flash. There was a big bang. It was louder than several fireworks put together. I felt I had been severely hit on my head. The pain was intense. I put the book down and cupped the head with hands. I moved over to the aisle. Movement was slow. Lila ran to me. She held me tight. I heard her calling out, “Lalcha”. I did not realize that there was blood. Alarmed, she covered my head with her hands. I could not speak. I thought I would faint. In the normal run I could not withstand even a jab by the pin. Jacob Thomas, rushed towards us, held me and suggested that we moved on. As we reached the door, we found a chair. He helped me on to it. I felt blood trickling out when I took the hands off. Lila later told me that blood was gushing from several spots at once. I took out the hanky and covered the wound. I pressed the hanky firmly down hoping it would arrest the flow of blood. Suddenly, I had become the cynosure of all eyes. We had ten to fifteen members of the congregation around us. I asked Lila to retrieve my books and the glasses. She ran in and fetched them at once. Jacob sourced a piece of cotton to cover the wound. I placed it on top of the handkerchief and kept on pressing the wound down. The hand stayed there till I reached the safety of a hospital.

There was deliberation on the hospital to approach. A few of our friends and some members of the congregation offered their vehicles to shift me to a hospital. Lila was grateful for the offer of assistance. But she informed that our car was available and that she could drive me to the hospital.

Kuruvilla Kurien offered to drive the car. Lila said she would do it, as she did not wish to inconvenience anyone else. Jacob objected and advised Lila not to drive at that critical juncture. I told Lila to pay heed and let Kuruvilla drive.

Ashwin had not reached the church till then. When we had trooped out of the church to the car, I told Jacob that we were expecting our son to join us at the church. Jacob told us not to bother and promised that he would take care of Ashwin.

As I sat on the chair at the rear of the church I had tried to recap what really had happened. An old GEC fan, a heavy one at that, weighing around 30/40 Kgs, had broken free. It was revolving at full speed when it hurtled down on its own. It rested on the bench next to where I stood. When I looked into the church I could see the rod hanging there sans the fan. What must have happened, it was construed, was that either the dome or the blade had grazed the top of the head, slicing off the skin of one and a half inch in diameter before it had skidded on to the bench. The wound was superficial in general and was slightly deep at odd spots.

While we were about to board the car – it was past 7.00PM – I saw Ashwin coming in. Even at that time I had been wondering what was delaying him. The moment I saw him I raised my hand and called out. He did not know what had happened. He thought perhaps
the worship was over fast and that we were on our way back home. He felt something amiss when he found a stranger at the wheel. Lila quietly explained the strange happenings of the evening to him on the short ride. Cool boy he was, he took it calmly.

Kuruvilla as he started did not seem to know where to seek medical assistance. We presumed he was proceeding to Cosmopolitan Hospitals. When he did not take the left turn to Barton Hill, Lila said we had missed the Cosmopolitan turn off. Kuruvilla said we could either proceed to SUT or Cosmopolitan which ever was our preference. “Let it be Cosmopolitan”, Lila concurred.

Kuruvilla drove up to Pattom, turned and proceeded to Cosmopolitan. The traffic was heavy and slow. He manoeuvred the vehicle with great difficulty – he had to ensure that he did no further damage to the injured person - and managed to reach the ‘Emergency’ of Cosmopolitan with a liberal display of the high beam and the horn.

At the Cosmopolitan the sisters and the doctors on call were very kind and of great help. They dressed up the wound efficiently, gave me a shot of serum anti tetanus and kept me under observation for more than an hour. They found me stable and advised us to go home. We were cautioned to be careful and to return at once to the hospital in case we had observed anything out of the ordinary.

The doctors had a feeling that a skin graft might be necessary. Suturing was not possible, as the skin had been ripped off. They advised us to consult Dr.P.A.Thomas, the Plastic Surgeon in the morning next day.

Kuruvilla was of great assistance at the hospital. He ran around like an errand man.

The worship at the church, which had broken off with the big bang and subsequent developments, was resumed soon after we had stepped out. I heard Achen calling out to the congregation to pray for the speedy recovery of the injured as we left.

The phone started ringing the moment we reached home. People who were at the church and those who had heard of the mishap tried their best to cheer us up.

Lila is absolutely shy and diffident in expressing her feelings in public. I was quite surprised when she ran to me and held me tight when I had moved out to the aisle at the church. Reeling in pain I was disoriented to the hilt. The single act of love and concern when she held me must have prevented me from a fall. It could have been disastrous in that condition.

Lila kept her composure all through. She broke down for a while only after she got me home safe.

Dr.P.A.Thomas at the Cosmopolitan Hospitals examined the wound the next day. He ruled out skin graft.

Achen who had phoned up in the morning paid us a visit soon after our return from the hospital.

28th March 2002, Maundy Thursday

It has been phone calls and visitors for two days now. It has opened our eyes to the affection and concern people have for us. The phone keeps on ringing. People keep on visiting us. The goodness in man soothes us and spirits away the depression and the trauma within us.

God is just great. Miracles do happen. Here am I, the living example. I have no complaints. I praise the Lord for putting me through the ordeal and yet protecting me. On that fateful day, anything could have happened. But nothing untoward occurred. I am perfectly alright but for the bandage that covers my head. In the midst of an oncoming and unstoppable tragedy God’s hands worked miraculously and kept me safe. His dynamics had shifted me to a different dimension for a fraction in time to keep me out of virtual danger. God certainly is mysterious and an enigma.

I shudder at the thought in case I had absorbed the full impact. Death just grazed me and had left me to live.



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Abraham Jacob, T.C 30/211 HNo.28, NSSKarayogam Road, Anayara PO,
Trivandrum 695029, Kerala, India
Phone: Cell 09447253532
Res 04712740722

IT IS NEVER THE END OF THE WORLD

 The fat head of Sundale Academy was very blunt. “Your son has failed in the 9th Class. We will issue a transfer certificate with the inscription ‘promoted’ if you are taking him out.”

“Where will we take him now?” the disconsolate mother, pleaded. It was the penultimate day of the academic year.
“That is not my look out. I do not have time to waste,” the fat man was at his brilliant best. He was the true follower of the one who had sacrificed himself for his fellow brethren. The tears that rolled out from Hazel did not move the tough man. The rotund man was the head of Sundale Academy responsible for churning out children in the most orderly manner. The children had to learn to conform. The mass production venture could little afford to have feelings for the individuals. The master had once scolded his followers when they prevented the children move up to him.
“Let the children not be denied. They are pure.” The master wanted his followers to love children, attend to their needs and take good care of them.
“Why should we think of a lonely child? We have such a large number of children to cater to.” True, the master had once narrated a parable where the shepherd had gone in search of a missing lamb leaving ninety nine of them behind. The shepherd went on searching till he could save the missing one. “But that is only a parable,” the fat man strongly believed.

Basil, Hazel’s husband had joined her by now. They sat there holding each other without knowing what had hit them. There were tears. The fat man looked on. He was unimpressed. He was impatient. For him it was another dismissal, another day. For him it was another mission accomplished. Somehow he had to protect the honour of his institution. He could not allow a drop of poison vitiate the hundred percent track record of his institution.
“Let the jarring notes go to hell. I’ll have an all distinction or at the worst distinction cum first class outcome. I’ll never allow anyone to mar the image of my precious institution. People flock to us solely on account of our impressive track record. It is the way of the world that a few must suffer for the common good of the majority.”

Sundale Academy had been sending two hundred and eighty students for the past two decades consistently for the HSC examination. As money making was the prime motive, Sundale Academy had been carefully splitting the large number into four batches of seventy each. More batches meant more teachers. More teachers meant depletion in profits. That the teachers were not paid exactly well was an open secret. The brilliant fat man encouraged the teachers to hold private tuitions at home or at the institution itself where they could mint money. Finding the prospects bright some of them had even given up their jobs and were into full time private tuitions that had offered the finest tax breaks. For, if the batches at the fabled Sundale Academy held seventy each, the tuition centres had more than a hundred per session. Admissions to the tuition centres were based on merit, the conditions for admission stringent than the conditions for admission to Sundale Academy. When the results were announced Sundale Academy was always at the top. It held a monopoly for top honours. There were no failures. Structuring was perfect. Distinctions were ninety percent with the lowly rest making up with first classes.

The fat man was totally justified in his action. Schools were only for the fittest. The fittest alone would survive. The world is no place for the weak. People longed to make their children doctors or engineers. One had to go by the market and not by the scriptures. It was money that mattered. A stand alone performance meant a healthy rush for admissions that ensured a heavy inflow of cash. It was cash that mattered in the market, not sentiments, not scriptures.

Though Basil and Hazel could not comprehend what had hit them or their dear child Noel, it was Dyslexia they were confronted with.

Dyslexia or Learning Disorder (LD) unknown to the early civilization was discovered only in the year 1888. It is a glitch in the ability to combine pictures or letters. The term took yet another five decades to be commonly used in the West. Although learning disability’s effects were hardly unknown to Asians it took a lot more time for the Asians to recognize it as a malady. Recent studies reveal that one out of five or twenty percent of the population is affected by dyslexia. However, experienced doctors indicate that dyslexia affects twenty five percent or one of four of the population. The enormity or magnitude of the problem is such that it requires to be addressed vehemently. Even though dyslexia is universal it does not affect every culture or language group uniformly. Its incidence is lower among the Chinese and the Japanese.

The dyslexics encounter trouble comprehending and writing characters. They confuse or transpose elements or concentrate on only one, missing the character’s real meaning. They encounter difficulty in catching up with their peers in the class room who are fast learners. They misspell. Their handwriting often is atrocious. They are slow learners. They need a little more time to grasp. In Noel’s class of seventy, the teacher never had the time or patience to attend to each one, let alone provide special support to the weak. The teacher normally moves ahead when she feels that seventy five percent of the students have grasped what she tries to convey. She brands the remaining twenty five percent as lazy. Neither she nor her institution is aware that dyslexia exists in the world and that almost twenty five percent of the population is under its grip. Where corrective measures are urgently required it is indeed very unfortunate that the dyslexics are branded as no good and in turn treated badly by the society. When dyslexia is diagnosed, what the afflicted needs is love, affection and understanding and not scorn or ridicule. The society fails to realize that except for the glitch that makes them slow learners, there is nothing wrong with the dyslexics. They are highly intelligent with capabilities that surpass the brilliant. Treat them badly and we make them traverse the wrong path. No wonder, prison population the world over abounds with dyslexics.

Dr.Akino Uno, Japan’s foremost expert on dyslexia states, “You can’t fix poor eyesight, but you can wear glasses. We can’t get rid of a disability. But we can teach people to compensate for it.” Dyslexia did not stop Thomas Edison, inventor of the light bulb and the phonograph, from achieving greatness. It had fuelled the creative fire in him. He is among a long list of well known personalities who were afflicted with dyslexia.

It was providence that his parents decided to consult a child psychologist after managing an admission for Noel in another school with great difficulty. It meant frantic visits to all the schools in the vicinity and a considerable sum as donation. Dr. Saira Mohan held a few sessions with them as well as Noel. She disclosed to them that it was dyslexia they were up against. She advised restraint. Noel needed support, love and affection and not negative criticism and the unbridled ambition of the parents to realize their lost dreams through him. He could only be Noel and could never be what the fat man of Sundale Academy had ordained. Noel did very well in his HSC examination the next year passing it with a first class. He has gone for higher studies where he is doing well at present. He has practical wisdom and does everything so well that he is admired by all he comes into contact with. He is grateful to his parents for supporting him at the most critical phase of his life. He is grateful to them for their love and affection when he needed it most.

A child at home who does not perform at the level expected is not a disaster. It may be dyslexia one has to content with. The disheartened parents normally tend to blame or brand the child. But the child is never at fault. He is born with dyslexia. He has not acquired it. Help the child overcome the glitches. Life will certainly be exciting.

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