Progeria Cases in India
Progeria is a debilitating, rare illness and genetic disorder with just 45 odd cases in the world. The disease which infects one in four lakh people, is present in India too. Bisul khan and Razia Khatooon,’s family in Chhapra, Bihar; has seven children, of which five are Progeria patients.
Out Of the five, three daughters, Guriya, Rehana and Rubina are dead; having passed away at the ages of 17,24 and 13 respectively. Two sons Ikramul (23) and Ali Hosain (22) are still alive, but their medical ages are 70 and 66. Two children Sanjita (21 year old) and Gulab Shah(7 year old) are normal.
The sad thing is that the villagers ostracized the Progeria-stricken family from Chhapra in 2003 because the children were considered bad omen. Bisul says “ My children could not come out of the hosue in the day. They were considered bad omens; they were called ghosts and the villagers abused my wife as a witch. We had to make do on the periphery of the viilage”. Razia adds “ The children couldn’t wear stitched clothes as they could not fit. They had to wrap blankets around their body”. Bisul became sure that the children were abnormal when they couldn’t bend their legs while sitting for toilet. Bisul says, “The legs of the children were really stiff at the delicate ages of 2 and 3”
Doctors Apurba Ghosh, director of the Institute of Children Health, Kolkata and Dr Chandan Chatterjee from Switzerland, were the first to diagnose this disorder. Rubena’s Pneumonia treatment convinced the medical team that the kids are affected with Progeria. Bisul Khan’s family in India, is the ONLY FAMILY in the world that has more than one case of progeria (five to be prescise). Dr. Ghosh says, “There are only 40 known cases world-wide, all isolated and seemingly random.On average, a progeria child will die by 17. They develop striking physical symptoms – premature baldness, heart disease, thinning bones and arthritis.”The family of Progeria was a curious case to the medical team of ICH and Chandan Chattopadhyay, who found out that the family had a defective gene, known as Amino AC.T
There is a trust called by S B Devi Charity home which takes care of the Progeria family’s needs, financial problems and medical requirements. It is to the credit of good medication and regular psychological sessions that Ali and Ikramul have been able to survive for so long. Though death is imminent, the children enjoy their lives and have fun. Both the boys love biryani which they can eat only in small measure(like 3-4 year olds do). Though the two kids know that Paa is a Progeria based movie , both have not seen a Big B film. Ali loves Salman Khan and Ikramul’s favorite actor is Shah Rukh khan.
Ikramul and Ali suffer from astro-arthritis and cannot bend their legs or sit properly. Their bodies are very weak and their liver and heart are under-developed. Ikramul knows the pitiful condition of his disease. “ I feel bad that I cannot run and play like other children,” he mentions. “. “My ailments are like old people. I feel so sorry for myself.” The longest lifespan for progeria in the world is 23. Unfortunately, both the kids are nearing that age.
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Posted by Starwin on 22nd November, 2009
Comments
I am shocked to see this,i just cannot imagine that there can be such a disease,Movies are a very good mode to make people aware of these serious diseases.People who are suffering from this disease can only feel the pain. If there are rare case in INDIA of progeria the goverment should take their responsibility.
it is really satisfying that there are only 30-40 cases of the disease worldwide. i sincerely hope that medical science will come out with a treatment to rectify the genetic disorder.
i do agree with swati that govt shd take care of the suffered family and the people around them shd also try to make the patient happy as much as they can. this is the ebst they can do……
when i saw the movie ,i was thinking how this could happen it is good trust are taking care & helping those family may god bless them
I was shcoked watching “Paa ” movie and more suprised when I read this . Hopefully no more children are affected by this sort of disease and I feel it should get a exposure in the society so that these disease affectedchildren are not left abandoned and are given moral support
I heard abt this disease through paa movie. i thank bollywood for having such a good movie and let us know abt such a disease.
I sincerely feel that as Swati said the Govt. should take care of this poor family since its a rare ailment. Thanks to bollywood for letting us know about it.
I was really shocked to know about this disease. Thanks to the movie PAA, every1 is aware about the same…
I feel that this sort of disease should get a exposure in the society as well as moral support.
I was glad to see the movie PAA but after seeing it Iwas shocked.I just imagined that there are still some children suffering from Progeria in India and as Sushant said that this sort of disease should get a exposure in the society as well as moral support I also feel that what he said is Right.
I really feel sad for these children. Thanks to Bollywood to give a exposure to this rare disease and make people aware about this.
I pray god not to give this disease to any child. and those 40 children who are already suffering from progeria had to be treated with great care and love until they’re on this earth.
I REALLY PRAY TO GOD THAT NOBODY IN THIS WORLD SUFFERS FOR IT . HOW BAD A PERSON SUFFERING FROM THIS WOULD FEEL
Amir chose,DYSLEXIA,made us aware.
Good subject.
but,PAA,Unbelivable AMITABH,enacting shocking progerian child,its not a subject but a rarest of rare ailment.
Parenting is joy.But,Watching ur child growing older each day,and knowing he
will appear older than you and suddenly disappear is brave.
Lets salute those parents and pray Almighty to strengthen such parents and society to handel progerian by showering love and affection.
i came to knw sch a disease exist after watching the movie Paa… and thereafter searched sites to knw more abt this…
i am seriously shocked… god blesss those children affected by this..
i wonder how God can be cruel ..pooor children… i Pray tht no famliy get sch babies…. or if they did….God plzzz give thm strength and happy life for them until their life span.
I could not control my tears when i saw Paa.Not because i felt sorry for the children who are suffering from this disease,but for us,who do not try to learn the message which they try to teach us in dere short span of time.There is nothing more difficult then yourself.We crib on all sort of failures and shortcomings in our life.The day we will learn about ourselves no situation will ever be difficult for us..
i feel very sad to know that one of these affected person named ikramul died yesterday due to respiratory problems in chhapra.i am feeling very sorry to read this message from yahoo news and also feeling sorry about the incident happened with him at his last breath.doctors didn’t care him with responsibility if they took care of him seriously he can live more days or years but unfortunately our govt. also didn’t took any step for the last surviving affected brother of ikramul.MAY GOD RESTS HIS SOUL.
yesterday i saw the movie PAA. I congratulate the makers of such movies like Tarre Jamin Par, Black,and offcourse PAA.Hat’s off to the people who care for such children which are deprived off the normal life.
I saw the Paa movie and read more and more about this rare disease. I was wondering how much profit Paa movie and its cast has made from this unique idea of the movie. Not sure if its a copy of some non Indian movie or not, as most of the good movies in India are copy of some other movies. Regardless of everything, I was thinking that if there is only one family in India with this rare disease, does Amitabh Bachchan and his family has contributed something for this family? After all whole family is a cast in this movie. I would be very happy if I came to know they have done something for this family. Even if they will go and meet the family, I must say the kids will be very very happy and that will be the best day of their life time.
No doubt the movie paa is awsome and an inspiring project and will be helpfull to make people aware about this rare disease but it is very painfull that the work which should be done by the gov is being done by the filmmakers…
hi thr is a newly admited case of progeria pt named ravi age 15 in my ward…
i am shocked to see this.it truly feels bad to see this.i want to say thanks to the movie makers of paa.because of this great movie we now know about the people who have this rare disease progeria and how their family feels.i just hope that there are no other progeria patients
even though progerian cases are just 40, there may be many unreported cases. the medical team must find a solution for this rare tragedy. lets keep praying…
i’m typing this with tears in my eyes . May the lord bless these people and give them a happy n peaceful life .
movie is superb, but the reality is shocking too. may God doesn’t give this disease to any one
It is sad that people get their information and knowledge through a average movie like PAA…..when a documentary was telecast on NATGEO when the children where still very young. Its about time you look beyond the silver screen for world awareness.
i really feel sad for these children. Thanks to Bollywood to give a exposure to this rare disease and make people aware about this.
I pray god not to give this disease to any child.I must say the kids will be very very happy and that will be the best day of their life time.
I could not control my tears when i saw Paa.Not because i felt sorry for the children who are suffering from this disease,but for us,who do not try to learn the message which they try to teach us in dere short span of time.There is nothing more difficult then yourself.We crib on all sort of failures and shortcomings in our life.The day we will learn about ourselves no situation will ever be difficult for us..
I was very shocked to hear abt dis disorder nd i came to know it after watchng the movie paa god plz help dis poor sweet children
god bless all the kids suffering from this diseaseand also given strength to their parents to take care of them.
god bless all the kids suffering from this disease and also give strength to their parents to take care of them.
i am realy so shocked to see mr. amitabh who suffering from a rare disease projeria. its too much painful. i wish now no any kid suffered from this painful disease
I was very shocked seeing this movie
i felt very sad for those children and
and pAA. I realy wish he didnt die.
it’s good to see that PAA movie has aroused a little intrest among the people regarding the diease and their bad conditions.
we should support these people so that life is not a burden for them.
firstly i would like to congratulate all the crew of paa muvie for inspirin me that made me study more abt dis disease..i really din first knew there wasthat such a disease i thought it was made jus for the muvie…i pray for all the patients suffering from progeria.let almighty god help them….
I would like to thank movie PAA to make me know abt the disease…
All the best to the patients of this disease…And GOD BLESS THEM!!!!!!
and also to their parents…
Its very shocking to learn this.
Vikrant- Its really impossible to draft my reaction after going through this documentation. The pain of Mr. Bisul & family members is……
To b very honest I don’t have words to say anything…..I am speechless
Thanks to Mr. Amit ji to work in such a sensitive issue and pulling our attention to part of society which is cornered by God and people around them.
I feel very sorry while writing this comment as we all can’t help them in any way.I will always pray GOD not to give such children to any parent.
I was shocked to see this type of disorder
I always pray GOD not to give such disorder to anyone
i pray god to cure all the childrean
from this disease
Is is most disturbing to know about this disease. I think, yes, the government should take the responsibility of treating Ali and Ikramul, because they are the only known cases in India. I pray to GOD, that none should be afflicted by such a disease.
Progeria is a debilitating, rare illness and genetic disorder with just 45 odd cases in the world. The disease which infects one in four lakh people, is present in India too. Bisul khan and Razia Khatooon,’s family in Chhapra, Bihar; has seven children, of which five are Progeria patients.
Out Of the five, three daughters, Guriya, Rehana and Rubina are dead; having passed away at the ages of 17,24 and 13 respectively. Two sons Ikramul (23) and Ali Hosain (22) are still alive, but their medical ages are 70 and 66. Two children Sanjita (21 year old) and Gulab Shah(7 year old) are normal.
The sad thing is that the villagers ostracized the Progeria-stricken family from Chhapra in 2003 because the children were considered bad omen. Bisul says “ My children could not come out of the hosue in the day. They were considered bad omens; they were called ghosts and the villagers abused my wife as a witch. We had to make do on the periphery of the viilage”. Razia adds “ The children couldn’t wear stitched clothes as they could not fit. They had to wrap blankets around their body”. Bisul became sure that the children were abnormal when they couldn’t bend their legs while sitting for toilet. Bisul says, “The legs of the children were really stiff at the delicate ages of 2 and 3”
Doctors Apurba Ghosh, director of the Institute of Children Health, Kolkata and Dr Chandan Chatterjee from Switzerland, were the first to diagnose this disorder. Rubena’s Pneumonia treatment convinced the medical team that the kids are affected with Progeria. Bisul Khan’s family in India, is the ONLY FAMILY in the world that has more than one case of progeria (five to be prescise). Dr. Ghosh says, “There are only 40 known cases world-wide, all isolated and seemingly random.On average, a progeria child will die by 17. They develop striking physical symptoms – premature baldness, heart disease, thinning bones and arthritis.”The family of Progeria was a curious case to the medical team of ICH and Chandan Chattopadhyay, who found out that the family had a defective gene, known as Amino AC.T
There is a trust called by S B Devi Charity home which takes care of the Progeria family’s needs, financial problems and medical requirements. It is to the credit of good medication and regular psychological sessions that Ali and Ikramul have been able to survive for so long. Though death is imminent, the children enjoy their lives and have fun. Both the boys love biryani which they can eat only in small measure(like 3-4 year olds do). Though the two kids know that Paa is a Progeria based movie , both have not seen a Big B film. Ali loves Salman Khan and Ikramul’s favorite actor is Shah Rukh khan.
Ikramul and Ali suffer from astro-arthritis and cannot bend their legs or sit properly. Their bodies are very weak and their liver and heart are under-developed. Ikramul knows the pitiful condition of his disease. “ I feel bad that I cannot run and play like other children,” he mentions. “. “My ailments are like old people. I feel so sorry for myself.” The longest lifespan for progeria in the world is 23. Unfortunately, both the kids are nearing that age.
I wish god gives every child a beautiful life.
allah kaareey ke kissii ko bhi progeria se suffer na karna parre….:(
:’(
its so sad…may no one get this disease.
I pray to god that he must give every child a good and healthy life.And should take care of all the children but should take care of these type of children.Ialso request the parents of these type of children not to panic.Govt. should provide all types of help to them with the help of senior scientists and doctors.I want to become ascientist and work on this disease and try to cure this disease.
hats off to mr AMITABH bachchan.. He is the real king.. i am watching it again and again n i cant 4gt AURO even for 1 singal second.. Its awesome.. never done before… Amitabh sir must got national award for this performance.. its amazing.. now there is lots of sympathy for Auro…..
I was surprised that progeria affects the life of so many children
progeria is a incurable disease. we cannot cure it but it can be prevented just by avoiding this kind of children to come in dis world. genetic councellin is one of the way couples may know that their genes are defected n the can drop the idea of having their offspring.this is more better than abortion.but genetic councelling is not so prevelant in india. it should be encouraged by our govt to have a healthy society.
progeria is a rare genetic disease which is incurable.. and i feel the govt shud take steps to look after the medical expenses of the kids. Also, after knowing the painful story of Bisul khan’s i wud suggest tht not only the govt but evry individual can contribute towards the awareness about this dreadful disease. And pray whole heartedly for the kids. Infact, all their wishes shud b fulfilled soon. Like, ali loves salman khan and i feel if these busy actors take out some time from their busy schedules for these kids..that would make thm very very happy. Also, proper social awareness is required. these kids shud not b considered as bad omens or ghosts. As it has been mentioned in bisul khan’s story that villagers treated his kids as bad omen and ghosts.these types of myths in people’s mind shud b changed and which shud b seriously considered.
FIND A CURE FOR IT PLZZZZZZZZZZZ
HOPE DIS CHILDREN DON DIE SOON LIVE HAPPILY GUYZZ 
send the doctor or the scientist who can cure this disease and let the children survive and do something good to the society
jai maruti
i can just pray for them…….THEY TOO ARE HUMANS they should be treated properly….
I pray God to give long life to these childern and I bend my keens and with teareyes i ask god not to design and leave such children on to earth
This is my request to all the human beings in the world plz. if u cannot love them plz don’t ot it but don’t laugh at them. plz. treat them also as ur friends.
i wish the god almighty should give them d power 2 resist d pain they r under going
if d god rewards me with 3wishes a will ask a cure 4 it…………….
its easy to just pay sympathy standing at a side. one knows when one is through it. medical science has made so advancements. it will a waste if a remedy is not discovered against the clock. this disease is an enemy of mankind. the more time it gets, the more harm it causes.
Being in a medical feild when i see cases like this and children dying of this ,i really feel helpless some times…lets hope in coming future v all could do something for LAMIN A ….
I FEEL VERY SAD ABOUT EVERY1 WHO SUFFERS FROM NON-CURABLE DISEASES. EVEN TEACHERS CAN SPREAD D KNOWLEDGE OF THESE TYPE OF DISEASES SO DAT EVEN D UNWILLING STUDENTS WILL REALIZE D PAIN. I CAN JUST PRAY DAT IN D CUMIN GENERATION NO1 SUFFERS 4M THESE DISEASES OR THERE SHUD BE A CURE 4 EVERY DISEASE! MAY GOD BLESS D SUFFERERS.
More than the patients themselves, the family of the patients suffer the most. Paa has done a nice job of making more indians know about it. I think more and more people must know about this disease to stop the people from mocking and hurting the affected people. God save these poor souls….
HEY!DONOT WORRY I WISH K THIS DESEASES WILL AISO HAVE A CURE AND YOU ALL WILL BE ALL RIGHT.