A.S. Face 2133: Kasturi Nori

A.S. Face 2133: Kasturi Nori


Hyderabad, India

A.S. Face 1596: Bharat

A.S. Face 1596: Bharat

Hi , my name is Bharat and i am suffering from AS from last one year and i am just 18 year old and doing my studies.
A year ago it started with a back pain , i made a visit to my family doctor once and said i have been having pain and it was quite normal and bearable , he gave me a painkiller as i said incase if it becomes unbearable . The pain was gone and after few days it came back again i used every relieving gels and spary but it was just a temporary solution. One day , i was talking with my neighbour and i just described about the pain that i was having , she said adviced me to go to the Civil hospital and I told to my mom that i wanna show it once as she knew that place well and was used to many people , at night i was in the hospital the doctor took my X- ray and said its normal and it happens ….and i was like i am having a pain right there and you are saying its normal . The Doctor said you can show it to the main doctor in the morning when he arrives and i returned home back with the pain in my back .
The next day , I went to the mai Doctor and he suggested to go for MRI and to come back with the reports. I still remember that my MRI was done at 12:30 midnight and one of the uncle was with the doctors team who was doing the MRI when i came out of the room my mom was still waiting there , Then the Uncle came from behind and said the doctor said that there if facet joint diffusion at L3-L4 level and reports will be given the next day.
I was happy finally i knew why was it paining like hell , i went with those reports to the doctor and he explained me and said you can go for physiotherapy and it will get cured by that .So I started my physiotherapy , and i did it for a month but it was not Much effective and the pain started increasing , I complained about the increased in pain level and the physiotherapist changed the exercise but days passed and the pain got worse , I was not able to lift my leg , i was not able to stand from the bed , if i tried to walk there were chances i would sit down at the place ..I wonder what was going in my body , My diet was good , i was doing my exercise , but still what’s the reason my body is giving up .After few days the pain reduced and i went to the doctor and said what happened with me in the last few days this time the doctor was changed he suggested me the same thing and said “Continue what is going , what is written is right “…Then i asked what about the pain , why am i not able to lift my leg ? He prescribed me with medicines and i went back to the same routine .Mean while i showed my case in an Ayurvedic hospital and the also said for physiotherapy …..puff.
After 4 months of exercise and medicine, i was supposed to be cured but no it got worse , worse and worse .I sometimes thought of ending my life cause the pain had reached my mind .One day while sitting and doing my assignments i looked at her and cried “I can’t bear it more ….”. The next day she made her contact to Dad’s closest friend as my Dad was out of state . The uncle took me to one the doctor and he asked me about my history , and while looking at MRI he found something strange which no doctor had seen , because the were busy focusing on the paper in which the final report’s result was return .The doctor suggested me for two blood report’s and out of them one was Hlab-27 . The report came out to be positive i goy those report in the evening so i have to show him next morning .Mean while opened my laptop and googled about it and finally knew what the shit was happening and who was doing this . I went next day to the Doctor and his name is Dr.Bharat Tiwary and he was like the God whogave me a new life , He suggested that you are quite young and you will get cure if you go for Ayurvedic or Homepathic treatment.
From that day i have been regular to physiotherapy , side by side i am doing the ayurvedic treatment and have completed panchkarma treatment once and i have also the homeopathy medicine continue with it.But, after all this things the pain is still there but i am used to , I know what to do the only aim is I dont wanna let it get worsen up. After all this i still smile :) .
My message to all the people out there suffering from AS ” Be strong and let’s stand out and show the world that we are one of the strongest human on earth .We can be an inspiration for someone , inspite of so many reason to give up we still fight and we will till our last breath :)

A.S. Face 1546: Abhi

A.S. Face 1546: Abhi

 My name is abhi,I have been suffering from AS since 2005 I guess…Initially it was just a catch /sprain kind of thing wherein physiotherapy used to do the trick of relieving it,but it kept up creeping up..Maybe the onset was hampered by my work where I’m physically active for most of the days..Only in 2012 It was given a name and I tested positive for the AS test..From then on it has been a steady downhill..I know not as bad as others out here but still my movements/flexibility is decreasing year on year..I’m on methotrexate and folic acid…I have been following other forms of treatment as well…I feel good ,somedays I feel I will have to overcome this ,somedays I feel no I can’t do it..I have a wife who is reliant on me ,for her I have to do things..
My life has changed,my social circle has reduced.I was an extrovert earlier but now I’m slowly turning into a recluse  fearing that people will see my limited movements..
Well we all have our fears…
Glad to be here…
I’m from India aged 36, where the treatment is harsh in terms of medication..
Regards
Abhi

India, Asia

 

A.S. Face 1474: Aysha

A.S. Face 1474: Aysha

My Name is Aysha
I am 27 years old.
This is my story…
It started when I was 11 years old and some boys playing football hit the football so hardly on my back which made me fall on the ground and since then I am suffering from a severe backache.
Years  passed by and my backache never reduced.
I never had any tests done and I never visited any doctor for my treatment.
I would treat myself by massaging my back which would bring instant relief.
I worked as a teacher and a tutor at home and I would often suffer through severe backache and stiffness,I could never sit without a pillow behind my back.
I always needed something behind my back so that I would be comfortable.
As a working female everything was really tough for me.
Trying to come home and clean the house and take care of everything is quite a daunting task when you’ve already accomplished so much.  You just want to sit down.The more you hold off the worse things get around the house but the more you force yourself to do it the worse you get.
It started a few months ago when I carried a really heavy bag on the way to the airport since I was travelling and I was unaware of the consequences that my back wont be able to support that kind of weight.
I started visiting my physiotherapist for relieving my back ache but after going back and forth to physiotherapist which was really of no use I went to visit the Spine Specialist and my tests confirmed my fears.
I was diagnosed about 7 months ago that I am suffering from Ankylosing Spondilitis.
I broke down knowing that this pain would never go no matter how hard I try to over come it.
Since then I can’t stand for more than 1 hour my back starts aching. At night I often wakeup with a severe pain and it remains the for the whole night.
I have severe stiffness on all over my back I can’t move.My sleep is usually not sound and I can be woken up at any given moment with a shooting twinge here or a muscle spasm there.
If I try to sit straight I get tired really quickly.
The moment I start walking my back starts hurting really badly and my doctor advised me to walk at least 2km daily.
I can’t do anything without bending and most of the household chores are the ones where I am supposed to bend. The doctor asked me not to bend as it affects my back.
Even when I travel in a car I need something behind my back or else my back hurts really bad.
Sometimes it’s so embarrassing when I visit my friends and I can’t sit straight. I just refuse to visit anyone anymore.
Is anyone going through the same?
I fight it everyday and I will continue to fight it as long as I can…
India, Asia

A.S. Face 1180: S.C.

A.S. Face 1180: S.C.

I am 23, and I am suffering from AS for the past 6 years now. I felt a cramping pain first in the first day of my college, took some pain killers but the pain was persistent. My parents took me to an orthopedic who told to do some exercises and there was nothing to worry, This step repeated for 4-5 months. My pain was worse and It was very difficult to move. Then my uncle told me to visit a rhumatologist. He first diagnosed that it was AS, the disease which is totally unknown to me, Doc told that it is incurable and an autoimmune one, I don’t have internet access then , so these terms were Greek to me. However I took 4 doses of infliximab in 4 years, and somehow completed my course. In 2010, I felt terrible pain in my stomach and diagnosed with IBD and GERD. Doc told me the GERD is coz of the infliximab.. and IBD is associated with AS. After 2010, I couldn’t afford sulphasalazine, humira, methotrexate, coz all these had severe side effects. I am under active rehab [swimming and exercise] and under homeopathic treatment, trust me in my case homeopathy does a tremendous job so far. My sacro-illiac joint is fused, have mild dorsal kyphosis, severe osteopania, loss of cervical kyphosis. Wo haa ! Seven incurable diseases, yet I am smiling see :) . So my message to all of you… Keep fighting.. keep accepting the facts.. keep your acceptance level to infinity so that nothing can bother you. A day will come..there will b better treatment, better rehab.. so cheers to life

India

 

A.S. Face 1169: Ashwini Jha

A.S. Face 1169: Ashwini Jha

My Dreams, My Life

The Purpose of My Life

Dream Great

Ideas are not born in streets,

But they arise in your mind.

What they only need is the great dream

And a daring attitude

Now when the world badly needs heroes,

What are you looking for…

Come on dream great, do hard

And if you have the fire in your heart

Snatch the stars from the sky

ULTIMATELY, IF YOU CAN DREAM ANYTHING

  YOU CAN DO ANYTHING

THE REBEL

No country n system born perfect, we have to make it perfect

don`t think that the system cannot change,

don`t think that India cannot change

we can change d world, system n our India

we can make a better tomorrow for us n our people

Let`s buried this system in its own coffin

n make a better tomorrow 4 ourselves

THE WAR AGAINST D SYSTEM HAS BEGUN

LET`S CHANGE D WORLD

WELCOME TO THE WORLD OF REBELLIONS………….

THE REBEL

ASHWINI JHA

This is a story of a boy 11 years old. A simple boy from a typical lower middle class Indian family but few special things in his life were , his father an extra ordinary hard-working man, an elder brother like friend and his studies as he was studious and deeply interested in electronics. In a small town of a poor state of India he was treated exceptional as he can make electronics gadgets with the ease like any child makes drawings. Very bad at games and without any friend, the only friend is a soldering iron (a soldering electric gadget). He spent his all time with his books and electronics. Doing electronics and good at studies fetched a lot love for him from his elders and society. People treated him as wonder boy, so obviously this all made the boy to dream great.
Just one year later he read a biography, biography of ‘Ashok Chakra winner late Lt.Puneet Dutt of 11, Gorkha Rifles’. Being deeply inspired by his capital sacrifices, he began to see his future as a captain of Indian army and began to love arms, (here his second interest developed) but just in mean time everything washed out, his dreams, his aim and his studies. He got a deadly disease (Ankylosing Spondilytis) spent four years on bed and doctors denied his cure. He was 16 years old when his doctor told him that his disease affected his heart severely and he needs to go 1200 KM far the national capital (New Delhi) for the Open Heart Surgery (Valve Replacement), now it was disastrous not because he has to through one of the toughest surgery of human body but because his family hasn`t any money left for.
It is tough very tough to kill your dreams, to see yourself dying gradually, more of that to see your family which is ruining because of your medical treatment expenses. It was the first taste of extreme economic conditions for him. It is the time when your nearest and dearest one begins to ignore you, they treat you as the useless garbage and you feel the most terrible loneliness which destroy you completely and same happened with the boy, everyone left hope apart from the boy, perhaps he knew that he will win the battle of death and by defying all the predictions and statements of big doctors he stood up to prove he is still alive and he still can do something. It was March 2003 when he got operated for Heart Valve Replacement( Arotic Valve) and even doctors were surprised with his fast recovery from the major surgery.Now again he was ready to give a tough fight to this painful life of him.
But things got changed now, he experienced the extreme pain and importance of money, his life got changed now  he knows very well that only in few years he has to do lots of things as the body is degenerating fast,especially his hip joints and he hasn`t a big span of time. He got his purpose of life perhaps very early than a typical Indian boy. He born at a place which is the most flood affected area of the state , a district of India which is fertile but undeveloped perhaps due to nature`s anger or selfish politics. He has seen poverty, illiteracy and unhealthy conditions at its extreme .He has seen how a farmer`s family do the mass suicide due to local lenders` loan, how a brilliant student left his studies to fetch the bread and butter for his family, how a small kid die because parents hadn`t a single rupee for paracetamol in the night when he got severe fever, how a beautiful and intelligent girl compelled to marry with a handicapped man because parents hadn`t the money for dowry. This all compelled him to think is it the life of a human? Why anyone die due to lack of a rupee for medicine when the other one spending Rs.10 or more on his onetime smoking.
Now to get rid of these all problem became the purpose of life for the boy. He determined that he will serve the humanity and will change the scenario. He believed that if even a street dog is doing something for the society by eating roadside litter than why can`t an individual can do something for the betterment of society. He began searching the solution of these all problems and got that in the typical Indian way of living if a single person has the employment it can change the life of at least five other ones, means a single employment can address at least five persons problems (food, cloth, shelter, health and education) and with the good education those dependent five can address the problems of other 25 in the long run in the form of their own family, means few employments and a school can revolutionaries the life of hundreds of people and these both can easily arranged by industrialisation either on small or long scale. Few books like” the wings of fire” and “the power of thinking big” have motivated him and with the dream of a big business empire he began to work towards the fulfilment the purpose his life.
Now there was the time to begin his academics again, as it was the first love of him and in India you are nowhere without degrees even none for your parents, it is cruel but very true. For the sack of his dreams he left his favourite physics and science and began his studies but It was tough very tough, the continuous morphine treatment for more than 4 years made him hostile to any sensation now simple mathematical calculations becomes most tough one, to study, assimilate and present concepts in English was tough for a typical Hindi medium student. But he studied and studied like anything, he proved himself and got best student of the year award in first year of his graduation. It was the day of cry (a cry of happiness, the power of dreams proved itself). He founded a student club “THE GREAT DREAMERS” and used to call himself a great dreamer. He believed that dreamers are the most powerful men of the world and now he was proving it. But perhaps God wanted something different, his continuous pains and degeneration of body compelled him to stay in hospital instead of hostel very frequently. But this was not the limit, he had to go ahead, his dreams were calling him. For the feasibility of his ideas and to know more about the poverty, money, economy and finance he has joined MBA.As much as he studied he got to know that he is right and his ideas can be effective, he was right that with right plans and determination an individual can change the scenario so he can also.
Entrepreneurship –the other side of the life of the boy, with the gradual study of business, the interest has developed and the boy come with some of the very good ideas of microfinance and agriculture business which can help him to achieve his goal, his purpose of life. Each idea has the excellent capacity to generate huge employment and to use the great agricultural resources of India. The boy thought that India where more than 62% of population depends upon agriculture directly or indirectly and they are still undeveloped, you can`t developed India until and unless you develop them. They are mostly illiterate so you can`t teach them the language of technology and software. So to develop India in real means it is necessary that the poor condition of Indian agriculture and peasants should develop and for this there is the need of simplification of modern science and technology into local and understandable language and applications. Only then the basic agriculture can be developed and so India. The boy believes that with business applications we can address maximum problems of the human. This is only entrepreneurship which generates wealth and money and money can break the vicious circle of poverty, which is the cause of maximum of human suffering(including crime and terrorism).For him business is not a means of bread and butter but means of building a society without sufferings.
Now he is doing MBA with a good college, learning new things and trying to apply them in his idea. Yes he is still behind lots of people, still a layman for lots of business terms, still struggling for survival (both academically and physically) but good thing is that he is still in the his race, with fast degenerating body he doesn`t know for how many years he can struggle with his continuous unbearable pain but he still has great dreams, dreams for his people, his country and for a society without poverty. Every second day is the day of depression, he cries alone but every third day he stands up for his dreams, for the purpose of his life.
He is following his ideals Mr.Vikram Akula (SKS Micro finances) and Md Yunus (Gramin bank, Bangladesh),who are working on the same idea more or less with same ideology. This is all about the use of business application to eradicate human suffering and develop the human civilisation socio-economically and anthropologically.
His purpose of life and dreams are the biggest motivator for him. Despite of his all problems he still thinks:- Dream Great Keep Rocking …..3rd April,2012
Next inning of life after academics , He got placed with a good company but now there was time of health care, in November 2012 he went through Hip Joint Replacement in which faced serious troubles due to Pre – Cardiac problems.Spent 4 months at hospital and 3 months at home for recovery ,joined job later and after few months resigned. Now he is jobless but not work less,these days he is roaming around accessing his worth, his resources and helping needful as much as he can by all means…………he is planning for a start ,where he can fulfil his dreams.
WELCOME TO THE WORLD OF REBELLIONS………….
THE REBEL
ASHWINI JHA
India, Asia

A.S. Face 1142: Sanjay Varghese

A.S. Face 1142: Sanjay Varghese

My name is Sanjay Varghese. Am from India. I am suffering from AS from abt 5 years now.

Am on Remicade infusion now.

India, Asia

A.S. Face 1133: Abdul Junaid

A.S. Face 1133: Abdul Junaid

Hi hello. My name is Abdul Junaid and heres my AS story.
My AS story. Hi  everyone.. I have AS since 5 years.. I was diagnosed at the age of 19 .. 24 now . If I remember correctly it all started with pain in my heels in August 2008. Then gradually started spreading to different parts. After changing many doctors finally I came to know that  its AS and was diagnosed in Dec 2008 . I am HLAB27+   That was the worst phase ..I was in severe pain and wasn’t able to walk on my own.  The doc prescribed me a bunch of pills which I had to take 3 times a day. Even then I dint used to get much relief  coz of which I wasn’t able to go out or to college. I dint went to college the whole semester and got Exed(failed). I’m an I.T Engg student. I was in second year at that time.  During this phase.. I came to know about a self proclaimed ’Scientist’  Dr Munir Khan. He’s the inventor of a ‘miracle’ drug BODY REVIVAL. His claim was that this medicine can cure  all incurable disease including cancer . He used to advertise his medicine in a 30 minute talk show on reputed TV channels with a yesteryear television actress. This man had celebrity clients as well. I went to his clinic with my father  situated im Mumbai (India) and came to know that it costs a whopping 15000 INR . There used to be a beeline to get his medicine.Its a 100ml bottle containing honey and herbs.A total herbal medicine. The dosage was 1tsp every 3 days.  They advised me to take it as per dosage and gradually cut the use of pills. This drug worked magically and there was no pain after finishing the first bottle. I dint had to take pills at all . After that I tried another bottle . And no pain again ,i was back to normalcy. But this ‘scientist’ is a controversial figure. When I went for the 3rd bottle ,his clinic was sealed. The grand success of this Scientist made others envy. And some people with vested interest started pouring in fictitious complaints against him. People call him a Cheat,fraud ,charlatan and blah blah . I dont know their side of story but his med actually did helped me in a great deal. Hes now cleared of all charges by the High court and started reselling the med just recently after a long gap at four times the price -60000 INR. I havent retried his med uptil now,but i want to. I wasn’t in severe pain for all these 3 4 yrs and was living a reasonbly normal life without any treatment on even in winter season. Dint use to exercise daily neither followed a special diet.  As of now my AS  is activated again.Since the month of October am experiencing pain which kept on increasing day by day. I visited a new Rheumatologist and he prescribed me NSAIDS and physio. But these arent working enough. I feel severe pain in the mornings as its winter season here. After hot bath physio and meds ,the pain comes down just one level. On my last visit he said I am under some kind of stress and it will only aggravate your condition. And referred me to a psychologist. I think the stress is due to my exams . My exam season is going on and I am unable to focus on studies.Whenever I sit on a chair  within 10-15 mins or so I start feeling restless,I get stiff and my buttocks start paining badly. Its my final year and have already lost 3years of academics due to this dreadful disease. I wanna get well again.But when would I?! Since the flare up started the pain has kept on increasing day by day. It real  worries me..am unmarried  yet.. hasnt even started my professional carrier ..AS lasts a lifetime.. how would I be able to support a family if I get married..how will I be able to work a full day when I start  my career . Its my age to look and take care of my lovely parents but its the other way round right now !
And a bit of info about my family. My dad was also affected with some kind of arthritis when he was young. But his disease faded away even before he got married and hasnt troubled him since then. Hes 56 ..a civil engineer by profession. And my 3 yrs elder sis was diagnosed with  Rheumatoid Arthritis at the same age as mine.She experienced piercing pain when she was diagnosed. A doctor once said to my parents that you shouldnt marry your daughter off. But by the grace of Almighty shes been married for 6 years now and has two beautiful kids . She hardly experiences pain now. I positively  hope like my dad and sis me too will get better sooner or later. Do share some tips on how you cope with AS and how to get over this Invisible Monster. And keep me in your prayers. And hope we find a “CURE” in “OUR” lifetime..!! Written in Dec 2013..!!!

A.S. Face 1033: Vinod

A.S. Face 1033: Vinod

At the age of 12 (year 1997), I had a problem with my teeth. After consulting with Dental specialist, doctor advised me to remove second molar due to infection. As per his advise I undergone treatment. After this treatment, bleeding not at all stopped for a week. During night time, bleeding continuously occurs and clotted inside the mouth. Even after taking medicines also bleeding not at all stopped. At last, I consulted another doctor for this problem and my dental doctor was shocked after seeing my clotted blood inside the mouth. He shared this information to his friend haematology specialist (Dr. Ishwar) and he decided to put stitches on this portion in order to stop this bleed. And my Doctor gave a reference letter to consult Dr. Ishwar for identifying the bleeding reason. But due to careless my parents not taken this issue serious and focus on their work.
A couple of month after I started facing pain on some portions with unknown reason. That pain will remain for few hours and then it will reduced. Again my parents consulted few doctors to identify the reason but unable to find. Then we finally decided to consult Dr. Ishwar haemotolgy specialist. He taken many blood test and finally he diagnosed haemophilia B mild 10% factor. Then he guided me how to live this life, precautions and so on.
Many years went with good and bad things in my life. At last I started feel my back pain in the year 2001. I couldn’t able to sit for a minute and I started feel negative depression and also I cried for many times even I decided to do suicide attempt because of my severe pain. Consulted many doctors but unable to find the problem. Even then also I developed my confidence level and I completed Engineering degree in the year 2006. After that went for a job in Printing and Publishing industry and quit my job at 2010 due to my back pain. Consulted many doctors and taken many tests even though problem not been diagnosed. Many doctors thought that I am telling lie due to some other reason but I feel severe back pain on those days.
Finally 2012, I consulted Dr. Ramesh (Rheumatology) with the help of my family doctor. He again asked me to take Bone Scan for diagnosing what the problem and found mild inflammation in my both Sacroiliac joints. For this symptom, they conveyed that I am another genetic issue named as Spondyloarthropathy (Severity Stage – Ankylosing Spondylitis). Taken many medicines but pain not even reduce to a 0.0%. Again I consulted another doctor from Apollo health care. He also suggested the same and he unable to give exact medicines for this problem due to bleeding issues.
Other than this, I am having Septal Deviation, Sinus, Gastric Intestinal (Severe Cough Problem).
Thanks & Regards,
Vinod
India, Asia

A.S. Face 0979: Nitin Singh

A.S. Face 0979: Nitin Singh

My name is Nitin  26 yr old from  India ! As a kid was very active until 15  started  pains backache  n started loosing weight  kept n visiting doctors for long time no diagnose was done had painkillers  ! Symptoms were growing and so was pain was so painful fell n ground many times   pain was so bad early i used to feel someone squeezing from in  and severe inflammation n back dr in 2006 tested for hlab27  was +  and referred to rheumy! The first thing rheumy said me you’re not going to die u have  as ! Neva heard before had lots of pills  had it taken for 6 months  my neck was stiff total  twisted to other side with drugs felt better but not free moved to ayurveda help of oil massage did wonder stiffness gone in two months! After that was on nsaid taking on sos  with time As was flaring now n then fatigue kyphosis were affecting bad most of the day was stooping bad  : Years passed  finally legs were not co Operating any more  I could  barely walk  had severe pain n inflammation took ayurveda treatment spent  lots of $ no use went back to rheumy under went x-rays and dr said they r fused need to be replaced!  Tears were flowing that moment was unable to control  big amount  req to  replace friends n family helped  ! No insurance here ! Now both hips r totally replaced doing better with time! Thank u asap I’m not alone u gave me some best friends who inspire me always ! Lots of love keep moving!
India, Asia

A.S. Face 0834: Ankush Vij

A.S. Face 0834: Ankush Vij

I am 32 year old from Pune, India. I was diagnosed at the age 15 and have undergone a hip resurfacing surgery at age 21. AS runs in the family with some of my paternal uncles diagnosed in their early 20s as well. I am HLA B27 positive. I otherwise exhibit all classic symptoms of AS, viz., back stiffness, stoop, neck stiffness, abdominal breathing etc. The lumbar spine is fused.
AS has taken away a lot from me but has also brought me closer to God and has kept me humble. I found my lifemate when I was in pro-school who is very understanding and tolerant of me, my AS as well. I wish other things in my life could be perfect, but I know they never will be. So I am working at it one day at a time and learning that it doesn’t matter in the end. I wish I can find peace with myself, accept all things around and make positive changes in my life and in the life of those arounds me.
I wish you all the very best with your endeavours and hope you achieve what you set out with. I am attaching my photograph and a picture with my wife who has been my solace.
God Speed.
Ankush Vij
India

A.S. Face 0740: Satyaki

A.S. Face 0740: Satyaki

I don’t know where to start with. I’m Satyaki, I’m 24 & I’m from India. It all started back in 2008 just 2 days after my 20th birthday. till that day there is not even a single day which I’m totally pain free. I’ve been diagnosed AS 3 days back & since then I’m happy, Because at last I know what I have & how I have to live my life actively. I’ve been to many doctors in last 4.5 years but no one told me what actually happened to me. now I know it. I don’t want to share the details of my pain with all you because I know we all have this same issue which we have to live rest of our lives. I want to share how it affected my daily life.
In 2009 I finished my graduation, my professors was so kind to me they allowed me to seat in the final university examination with only 2% attendance. Those days the pain was new to my body & sometimes it felt like I’m in a middle of a hell.  & after that I had to take a year break for this savior pain & then again started further study. in 2010 I joined my post graduation program. This time the case is totally different. My attendance was down again & again in every semester. But my HOD never allowed me to seat in the semester examination. Nobody except my parents in this world believed that I’ve a pain which suffers me everyday. I’ve problem doing simple things like brushing my teeth in the morning. how can i make them feel i didn’t have any idea. BTW now I’m in the final years of my study & my semester will be soon. Hopefully this time my HOD will allow me to seat in the exam (If he knows anything about this,  otherwise he won’t). In the class also I was not regular to submit the assignments & I’m the worst boy in the class in the professors eye. I don’t know how to tell them “sir, I’ve a pain throughout my whole body which suffers me a lot each & everyday of my life, I always try my best but I cant do it all the time” why should they believe me? I tried to tell them once or twice. The answer was “Don’t try to fool us. we’ve seen lots of lazy students like you. you don’t have any thinking about your future.” This was the story inside the class. There is a same story outside the classroom with my friends. I always tried to match them physically. sometimes I succeeded but most of the times I failed. As I’m very irregular in the class not everybody even recognise me inside the classroom. still I’ve a few good friends there. But I never wanted to feel them that I’ve a pain. I always tried to react as normal as possible. Sometimes my walking style was a thing to smile between themselves, sometimes my standing posture. But I always ignored them & there is always a question in my mind, what the bloody hell happened to me, why can’t i stand normally like them, why can’t I walk normally like them? after coming to home or hostel I tried to stand in front of the mirror & tried to correct my postures, but i failed 90% of the time. My friends from my hostel always tried to prove that i’m a lazy person & i’ve some pain like grandfathers. How do i even expect that a bunch of 20-25 year old boys will understand what is happening inside my body when my HOD is not understanding it.
That was my days in the college. But I’ve a life other than college. I’m a travel freak person & love to travel around all over the India & take photos of different places. I’m also passionate in street photography since last 6-7 years. Taking photographs is something which i can’t live without. I travel whenever i get a break from my college. sometimes i can’t go anywhere even in a break because of extreme pain. I’m a great Himalayan fan & love to go there since my boyhood with my father. But after 2008 I’ve never ever in a physical condition to be there. It’s really frustrating. because of this I choose to visit other places & i love to travel alone. while traveling in the train for 2-3 days I suffer lots of pain which affects the rest of my travel a lot. I still dream of go to some treks in Himalaya. every year I plan it in a hope that i’ll overcome the pain but unfortunately It’s always with me & i’ve to cancel the plan year after year. My traveling also reduced in last 2 years because the pain was increasing everyday. this is the same case while shooting in the streets. we have a small group of 4-5 people from all ages whom love street photography & we usually take the road together not more than 3 at once. So we usually walk 8-10km a day. sometimes that feels like 100km to me. Those are the times when I really get frustrated.  Sometimes I miss some good shot because I didn’t have the pace to match with them.
Now comes family. I’ve no problem with my family. they were always believed me that i have a pain. whenever i’m home i used to be in the bed all day & night & they always allowed me to do that. I’ve a very supportive brother who supports my everything. After knowing that i’ve AS he is the most active & trying to fix a appo with a good rheumatologist. but now i know i can’t rest all day when i have extreme pain. I need to be active.
I’ve never told about my problems to anyone, what only my parents knows that I’ve pain. that’s it. I don’t wanna tell them more because my mom is a cardiac patient & that can have an effect on her health. I never told anyone because I tried to tell some people who r close to me. but no one believed anything. since then I’ve stopped telling to anyone. but now I know everyone will understand here what I’m trying to say & what I was going through since last 4.5 years.
What I always tried to do is push my limit of tolerance. I always believed that pain can’t rule my life rather I’ll rule the pain. everybody has some problems in their life. we have ours. Life is not smooth & we have to accept that. I do whatever I love to do. sometimes maybe not in the way I want but in some other ways. This planet, this nature is beautiful & I’m are thankful to God that I’m a part of it. A Sunset from top of a pick can give me the pleasure which no painkiller in this world can give me. so don’t think about what you don’t have  but always think about what you have & try to maximize it.
 India

A.S. Face 0603: Sumit Paul

A.S. Face 0603: Sumit Paul

Hello All,
I am Sumit Paul, from Calcutta, India.
I am 26 years old, and I am suffering from AS for the past 7 years now.
I felt a cramping pain in my right knee area at the very beginning of my college life, took some pain killers, as docs prescribed. But the pain was persistent. Doctor thought it’s just some water get deposited at my knee area :P. But day by day my condition didn’t change, even it became worse. I was unable to move unable to walk or do anything. Had a walking stick of my grandpa, was using that one..
Then I went to an orthopedic who told me to do some exercises, gave some medicines and told there was nothing to worry. I can go to my college from the very next day, (its funny coz at that time I was unable to move my leg, I lost the total control over it). I was under him for 3-4 months. I even did Biopsy.  My pain was worse and it was unbearable & condition was not at all well.
Then my brother who is a surgeon in a very famous hospital here, he told me to visit his teacher, who taught him when he was studying MBBS(Doctor). He saw me only one time, with just the movement of my knee/leg he first diagnosed that it was AS, and I am a HLAB27+. I don’t even know the meaning of it, felt like X-MEN . Like I have the power of doing something incredible …hahaha!!!
The disease which is totally unknown to me, Doc told that it is incurable, an autoimmune, progressive arthritis. There is a famous Indian movie called ‘Anand’ where the patient suffers from cancer, scientific name -  (lymphosarcoma of the intestine). I thought something like that.  These terms were Hebrew to me. He treated me in a very controlled way, gave medicines and injections in a mathematical approach, and asked me to do some specific exercises. Slowly, gradually I completed my Engineering. Now I can stand on my legs, walk, can go to office, and can visit places. Today, whatever I am, it’s just because of him. I am really grateful to him. He is just like a God to me..
Right now I have severe pain in my SIJ area and some other complications due to Sulphasalazine and some other medicines. But it’s part of this illness. You can’t get rid of it. I know it will increase day by day.
Life is very unstable, one moment you’re at top of the world, and in very next you just …..Vanished..!!  Yet it has some wonderful twists & turns, the more you will face the stronger person you will become. . It’s precious … Keep fighting.. have patience and accept the facts.. Keep your acceptance level to infinity so that nothing can bother you.
Life is Beautiful.. Take care my friends.
– Thanks -Sumit Paul
India

A.S. Face 0560: Amrit Barat

A.S. Face 0560: Amrit Barat

Hello. I am Amrit Barat. I am from Kolkata, India. I am 22 yrs old. I’ve just been diagnosed with AS in April,2012. Everyday when I wake up in the morning I feel that I am not well. A stiffness and a pain always stay with me. I am trying to fight against the pain. But unfortunately most of the people does not understand that how much pain we have in our body. I only feel bad for my parents and for my girlfriend.. I told her to leave me, bcoz someday this pain will kill me. but she does want to understand that. She loved me too much and I also love her. But I know we cant spend our life together for this pain. And also feel bad for my parents they feel bad when they see me into a lot of pain. This disease is worse than all the other life killing disease.. In the case of other disease may be you will be cured with medicine or you will die… But in the case of AS you will surely die but with a lot of pain in your whole life.. It will killing the patient continuously day by day.. Lord Buddha said “Pain is the outcome of our sin.” But I don’t think we didn’t did that much bad work that we deserve that much pain.. Trying to fighting against AS everyday.. So we all who have AS are the WORLD STRONGEST PERSON IN THIS WORLD.. AND SOMEDAY WE WILL WIN AGAINST IT..
India

A.S. Face 0454: Mohd Shakir Khan

A.S. Face 0454: Mohd Shakir Khan

I am Mohd. Shakir Khan , I am 29 Yrs old .I Live in Rajasthan ,India. I am diagnosed with AS in May 2009 and i started taking Remicade since then and currently living a normal and steady life. Hoping for a more better and permannet cure for AS.We need to more stronger than before. –

Regards

Shakir Khan

India

A.S. Face 0366: Sridhar N.

A.S. Face 0366: Sridhar N.

 

   

 

Diagnosed in 1995 after a year of pain and immobility. I realize after reading so

many stories here that my diagnosis was quite fast. I thank my cousin who was

a medical student at that time and we were living in the same city and she suspected

some auto-immune disease when I talked to her about my hip and back pain.

Even more fortunate I was that her mother (my eldest aunt) is a radiologist and

knew that this was AS, since her sister (another aunt) has it. So when I went to my

home town during my exam preparation break (I was in my first year of engineering)

she took me to a Rheumatologist she knew and he confirmed her suspicion.

I was too young to realize what would follow, but my mother's reaction is

something I remember even now. She broke down into tears. I know now

that she saw her older sister suffer for many years and that is why she reacted

that way but at the time I was clueless.

Four painful years passed with blood test almost every month and my relatives trying

to tell me the importance of exercise.

I should mention this for the benefit of the young women and men here who have been

diagnosed early. Please do not neglect exercise, it is really important. When we are in our 20's

we can tolerate the pain and delude ourselves that this is the extent of it. Unfortunately,

I am an example of that being false. Please learn swimming or some stretching exercises

which you can do at least 3-6 times a week.

I went to the US, did my masters, worked for a few years, got worse, could not complain to

my family because I was far away. I had 5 bouts of iritis/uveitis which took away 30% of

my vision in the left eye ( I cannot read with it even with glasses) and after that I found

it difficult to find work and had to return to India.

A few more bouts of iritis and painful check ups I decided to try alternate therapies

like acupressure and ayurveda with limited results.

From the past 3-4 years I have not visited any hospital or consulted any doctor.

I continue to swim 6 days a week and be vigilant.

My upper back (9vertebrae) are fused

and I am in constant pain.

I keep myself busy with my work and happy interactions with my nieces and nephews.

Someday I hope there will be a cure and the young AS sufferers here will benefit
from it and not have to go through so much pain and loss.

Thank you for reading :)

India

A.S. Face 0084: Krishnanjan Pramanik

A.S. Face 0084: Krishnanjan Pramanik

I am Krishnanjan Pramanik (age 23) from India. I have diagnosed with AS and Uveitis two years back. I was unable to walk due to the swelling of my ankle and knee as well as worse low back pain. But now my condition is much stable by the medicines and physiotherapy. But I am in regular check up. I am really worried about my future as I know what can happen in acute case of AS. I want to give thanks to the organizations like you by which I can share my pain with other people who have AS. In my arround there is nobody with whom I can share my pain except my rheumies..
Kolkata, West Bengal, India

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