A.S. Face 2133: Kasturi Nori

A.S. Face 2133: Kasturi Nori


Hyderabad, India

A.S. Face 1842: Refael Phillips

A.S. Face 1842: Refael Phillips




I was diagnosed with Ankylosing spondylitis in 2000 whilst I was at post grad med school doing my PhD in psychiatry. In the beginning it was analgesics that kept me going (not very well) but I was determined to keep going. I had a brilliant rheumy in London (he retired) and most of the time had great docs. Now I’m on biologics, but after neurosurgery in C-spine in 2014 everything is a struggle.  AS took from me the only important parts of my life: my marriage, my job and my mental health.

A.S. Face 1662: Peter Bautista

A.S. Face 1662: Peter Bautista

Hi everyone! I’m peter 26 years old and I got my diagnosis of AS about a month ago. I have been having symptoms of back pains for about 6 years before I was diagnosed. In 2014, I got severe back pains and PTs and medications can do nothing and it turns to an operation. Fast forward to 2016, I still had back pains and stiffness throughout the years. I went back to my Ortho and tell about what happening to my body. He ordered the HLA-B27 test and other blood tests. After getting the results he referred me to a rheumatologist. I had the HLA-B27 test, blood works, x-rays and MRIs. I was finally diagnosed with Ankylosing Spondylitis. The damage is now seen on x-rays but not fused yet. Through people who surrounds me, understanding and accepting for what condition I have, I am hoping and trying to stay positive about my future. I will do my best I can to live a normal life. #GodwillKickmyASoff #autoimmune #ASawareness

A.S. Face 1649: Carrie Kellenberger

A.S. Face 1649: Carrie Kellenberger

My name is Carrie Kellenberger and I was diagnosed with Ankylosing Spondylitis in February 2009 in Taiwan. I was born in a small town in Ontario, Canada, and I’ve been chronically ill all my life.
AS has robbed me of my freedom and my ability to move without pain. It has changed my relationships with my husband, family and friends. Most of all, it has changed me.
Despite being chronically ill, I was very athletic up until three years ago. I excelled at sports throughout high school and I maintained my love for exercise until a few years ago. Today, walking 6,000 steps a day is a challenge for me and the thought of going to a gym scares me.
As a young woman, I had all the classic symptoms of AS. I had persistent low back and neck pain, ongoing knee pain, low-grade fevers and autoimmune fatigue. I had chest pain at the age of 24 that still comes and goes every few months. Someone once fractured my ribs by hugging me too hard.
I do not have the genetic marker for AS, but everyone in my family has an autoimmune-related disease. My grandmothers and aunts suffered from inflammatory arthritis on both sides of our family. My pain has steadily increased since my early 20s. I’m 41 years old now and I am in pain every day.
Before I left Canada in 2003, my doctors never suspected a serious autoimmune condition. By the time I moved to Taiwan in 2006, I knew something was really wrong. My symptoms got worse as the years went by. I was in and out of the hospital all the time from 2007 until early 2009 but no one ever had any answers for me. Every time I went in, it was for something different, so I can’t blame them for not knowing what to look for.
Two months after I got married in December 2008, I woke up with knees that looked like small bowling balls. My husband took me to the ER at Adventist Hospital in Taipei where I had them aspirated. Walking was out of the question for two weeks after that. I used a cane for the rest of the year. My legs have never recovered from that flare; you can still see the damage to them today.
I was referred to National Taiwan University Hospital in February 2009 where I was officially diagnosed with Ankylosing Spondylitis at the age of 34. That was the day I found out I was never going to get better. There is no cure for AS.
It took all year to come out of my first severe AS flare. I had horrible pain in my lower back, hips and legs. My knees swelled every 5 to 6 days. I didn’t leave home that summer. When I did, I never left without my cane and support bandages. I kept my legs wrapped and elevated on ice for two months, trying to quench the fire that was burning through my bones and muscles. Walking was agony. Standing for too long made me feel like my legs were going to snap in half. Sometimes I just collapsed.
The burning nerve pain started that summer in June 2009 and it has never stopped.
Then I developed severe foot and calf pain. At first, I thought it was from wearing high heels, but I realized one day that the pain never let up. It feels like I’m walking on glass every day.
I had small flares in 2010 and 2011. Then I crashed again hard in late 2012. That flare lasted over a year. I spent hundreds of dollars seeking relief from traditional Chinese medicine doctors; including treatments like bloodletting and cupping and a course of traditional Chinese medicine that made me vomit all the time.
It all made me worse.
Nothing could stop the fatigue and pain that was pounding away at my body in never-ending waves.
I’ve tried endless combinations of medications. Some made me gain weight, some made my hair fall out, some of them gave me horrible rashes, and some of them made my nails so soft and thin, it was a wonder I kept most of them.
Imagine waking up every morning and not being sure if you have the strength to go to the store, take a shower, or even eat. Being chronically ill requires learning how to find a balance between surrendering your day and fighting for your day. I still haven’t figured this out yet, but I know my hard limits.
In June 2014, I started my worst flare to date. It started when I at an all-day outdoor event in Taiwan. I came down with a fever a few days later and my knees swelled badly. I didn’t leave my house for a month and wasn’t sure if I should fly home for summer vacation. I went, but it was a bad decision. By the time I boarded the plane, I could barely walk; it hurt to sit and it was torture to stand.
When I arrived in Canada after 30 hours of traveling, I was very ill. I didn’t even have the strength to sit up in the car with my parents on the ride home. I laid flat on the back seat the whole way home, trying not to cry from the pain.
I’ve been sick since July 2014. I am in pain constantly. It’s like a vise that is squeezing all my bones together. It’s a forest fire running wild throughout my body – everything burns.
I swim through an ocean of fatigue every day. Some days it’s so bad, I don’t get out of bed. Autoimmune fatigue is not like the fatigue you suffer from a late night out or when you’ve been up with the kids all night. Autoimmune fatigue is a different kind of fatigue, and if you’ve never had it, I hope you never will. It feels like you’re being dragged through concrete or like you’ve been slammed into something and you’re pinned there, struggling to get through it. There are days when I can barely pick up a water glass. The strength just floods out of my muscles, so I am always careful about what I carry and how long I carry it for.
Since July 2014, I’ve been diagnosed with Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain Syndrome, but you’d never know it by looking at me.
I started seeing the top specialist on AS in Taiwan in May 2015. He was aggressive with his treatments and I’ve tried close to 14 new medications in the past year. I’ve had cortisone shots injected in my spine and ribs. The side effects from most of my meds were as bad as my disease symptoms. Once, I had an extreme reaction to a medication that almost killed me. I’ve since weaned myself off the worst of them and I’ve changed my diet and the types of products that I use personally and that we use in our home.
In early 2016, my rheumatologist had me branch out to other specialists under his supervision. I had great success with the insomnia specialist I was referred to. Thanks to him, I am sleeping better now. Being able to sleep has helped immensely with my battle against AS.
Overall, the health care system in Taiwan is good and I am fortunate to have access to medical care when I need it. I have also been able to seek assistance with pain management through Reiki treatments, massage, acupuncture, acupressure, and traditional Chinese methods such as cupping, scraping, and bloodletting. Most of these alternative therapies are still relatively cheap in Asia.
I have had some success with Reiki and acupressure. I cannot tolerate acupuncture or Chinese medicine.
I think I’m finally starting to come out of the flare that started in July 2014. It feels like my body has reached a point that it can function at. Perhaps 8 out of 10 with pain is my new normal. I am getting better at smiling through the pain. It still feels like I am walking on shards of glass all day, but I don’t have to work as hard to convince myself that it will be a good day.
I believe in sharing my story with others and in assisting with awareness campaigns for Ankylosing Spondylitis, Fibromyalgia, chronic pain and invisible illnesses to let others know that they are not alone. I am deeply involved with Walk Your AS Off and Walk AS One.
Illness is an isolating experience and it is easy to believe that no one else can be suffering the way you are suffering. The truth is that there are many of us out there and we are stronger when we work together for awareness. I hope our voices will be heard soon. It is my greatest wish that we find a cure for AS soon.
Thank you for allowing me to share my story, Cookie.

Carrie Kellenberger
http://www.myseveralworlds.com

Taiwan, Asia

A.S. Face 1616: Abees

A.S. Face 1616: Abees

I would like to share my story of Ankylosing Spondilitis. Its been only four months, I am diagnosed with AS and struggling with pain. 9 years before I have diagnosed with spondilorthropathy and were advised to take medicine. My bad that I didn’t take my pills as I wasn’t much aware about the disease and my fear about side effect’s of the medicines. So the result was an advanced AS. Nowadays, am recovering well. A good diet, sleep, medicines and most importantly exercise keeps me going forward. Some days are so good without pain and some are very bad that would lead to depression.
Its good to see the story of others, their smile, as its an inspiration to take another step.
To all AS’ers please Don’t give up your hopes, Live your life as it comes to you. Fight..

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 1545: Rana Navid Anwaar Khan

A.S. Face 1545: Rana Navid Anwaar Khan

Mohammed Navid Anwaar khan S/O Rana Anwaar Ul Haq

Was born 2 March 1974, a Geographer, Geo-Entrepreneur, Social worker, businessman, and the founder & president of Pakistan Geography Alumni Association & Peoples with disability organization. Mohammed Navid is serving as Geographer Entrepreneur for the country who introduced a state of art scientific and educational website for Geography students in 2012. http://www.pakgaa.com . PAKGAA has contributed to the advancement of geography subject.
Born in Faisalabad and complete his graduation from Govt Post graduate College Faisalabad. After that trained as a Geographer at Govt Post-Graduated College Asghar Mall in Rawalpindi. During in his study of MSc Part One start the severe pains in different parts of body and actually it is start of a cruel disease Ankylosing Spondylitis, previously known as Bechterew’s.
This disease is a chronic inflammatory disease of the axial skeleton, with variable involvement of peripheral joints and nonarticular structures which are diagnosed after 9 years studies. With this disease he passed his Master Degree in 1998 and got job as internee in LOOT Advertisement Paper Blue Area Islamabad .After 10 months he moved to back home and start business of security surveillance, with the passage of time pain of joints going increase.  After that in 2005 he joined an IT company INBOX working as Key Account Manager and in 2006 than switched to another IT Company Computer Super Market as Sales Manager and working there till date. In 2011 he came to know that both hip joints damaged and need to change with artificial joints. Finally, in September 2011 he replaced one hip replaced and second hip is pending due to financial reasons till date but Alhamdulillah his moral high to do something for peoples of disabilities, as well as young Geographers and he is running 2 NGOs first is for Geographers PAKGAA and second is Peoples with disability organization.
He pays thanks to his CEO of his IT Company Mr.Naeem Siddiqui who helped him a lot that why he is still on his job. Mr.Naeem Siddiqui is also a role model in private sector who helps the PWDs and facilitates them. He set a great example for others private company owners.
“Peoples with disability organization” is working form last 2 years for the accessibility and self defense. It is not foreigner funded organization they run it by his own finance and with the help of local community. Main aim of this platform is to raise voice for the rights of disable especially for the students of universities.
Mr.Navid is also working as bureau chief Faisalabad with Pakistan Special Magazine from last year. He has been working to create awareness through articles, success stories, interviews and features within the society about the special needs of PWDs specially focus and covering the outreach areas PWDs stories Problems solutions.
With this disease when a hip joint mobility is less than 10 percent as Geographer he organized 2 mega events on latest tool of Geography GIS. (GIS DAY 2013 & GIS day 2014).It is great honor of his organization PAKGAA which is sponsored for GIS day form American company ESRI. He arranged a mega event GIS DAY in 20-November 2014 and travelled 1500 kilometers in his 3 days tour for the kids of Danish School Jhand Attock,students of Govt college university Faisalabad and PMAS-Arid University Rawalpindi where he celebrate the GIS day with them, also distribute souvenirs,Shields,gifts and certificates. In this condition it is a great barrier which he cross and set a example for other PWDs.He is wheelchair bounded and believe that “It is my will & passion which moves me ahead not the wheels….”
Mr.Navid has been working as IT professional and running 2 NGOs with this chronic disease. He is first Geo-Entrepreneur introduced a term in Geography, “GEO-AGRI Tourism” and working on it from last years and conducted 3 events on it.(Dine in with nature, national Citrus Festival, Tunnel Farming & Kitchen Gardening ).

“By the grace of all mighty I feel happier than a normal man because it is my Allah SWT s will and we are selected special human beings”

CEO Pakistan Geography Alumni Association presenting certificate to

Principal Danish School Jhand Attock

19 November 2014

HOD Geography Department Miss Ayesha (GC University Faisalabad) Presetting Shield to Mohammed Navid Anwaar khan.

21 November GIS DAY 2014

AS CEO Pakistan Geography Alumni Association Presenting SHIELD & Soveniours

TO Prof. Dr. Rai Niaz Ahmad VC PMAS Arid University Rawalpindi.

20 November 2014

Dine in with Nature

25 December 2014

Mohammed Navid Anwaar khan Bureau Chief Faisalabad Pakistan Special Magazine

presenting his magazine to Vice Chairperson Parks & Horticulture Faisalabad.

Pakistan, 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 1472: Andrew Delos Santos

A.S. Face 1472: Andrew Delos Santos

Philippines, Asia

A.S. Face 1403: Ayad Abbas

A.S. Face 1403: Ayad Abbas

am ayad abbas 53yrs old, having AS since age of 20 . when i was student in college of medicine. i discoverd and diagnosed my disease by myself when am listening to lecture of rheumatic diseases in 3rd yr of my study in medical college. i am took no medications for several years after my diagnosis of AS but only physiotherapy. i was tolerating the pain with out any medications for several years so that to avoid side effects of medications coz am a Doctor and know the many side effects of medications.

I finished my hard study , and now am doing my work normally as specialist doctor in pediatric teaching hospital.

best wishes

Dr. Ayad

A.S. Face 1352: Aaron

A.S. Face 1352: Aaron

My name is Aaron and i am the face of AS and i stay in Singapore. I was diagnosed with AS when i was 20 years old when i experienced great discomfort starting from my lower back. Due to my job in the military, i had to be revocated to a lesser physically demanding position from then on medically downgraded to PES C9L3. I am positive with the HLAB27 gene.
However the pain really started to hit me most in 2009 when my spine started to experience to most pain and stiffness particularly in the mornings will last for several hours, it was so bad i’d find it hard to get out of bed. Not long after, i started to come out with my own “AS stretching regime”, i wld  go to the pull up bars many times in the day just to use my whole body weight to release the tension and “crack” my spine as how a chiropractor might do it. It brought me some relief each time i do that but the pain would come back very soon thereafter.
In 2000 pain started traveling to my other parts of my body, including my fingers, my ribcage, my toes, eyes and MOST on my neck. Today my neck is also no longer straight, it tilts to the right. There were days my fingers could not even squeeze the toothpaste out as they were too painful at the joints.
I have tried all kinds of Ankylosing spondylitis treatment from NSAIDS to biologics like enbrel and humira and of course not forgetting sulfasalazine and methotraxate. However these drugs did not help me much and many times caused me to be falling ill so very easily.
The pain is with me every day but the pain level varies. I used to be very active in sports but no longer can manage long distance endurance sports or carry heavy loads. On a social level, i find it hard to predict myself when i’m feeling ok to join an activity or a bicycle ride that some times my friends may organize. It’s hard to explain myself as some of them may think i am creating an excuse for myself. So i no longer really explain the pain i go through. I don’t blame them though. Chronic pain and disease is a lonesome affair.
These days, i try to work on a cleaner diet to help minimise the pain and i’ve just discovered a book called “the perfect diet” which works on a refined approach to a paleo diet. Let’s hope it helps me and i will in turn will share this piece of information and good news to everyone in the world suffering the same disease or group of diseases as me.
There were a couple of days in the past 4 years that i felt much less pain and i was sooooo happy that i decided to go on a long long bicycle ride. I would give up anything just to feel pain free.
Staying strict to a Paleo diet is extremely hard and requires great discipline from me. It is also harder for someone living in this part of asia where almost everything sold outside has some form of starch.
I will stay strong and positive for my family and i will exercise whenever there is less pain and less tired.
Thank you for giving me a chance to share my disease.
Singapore, Asia

A.S. Face 1274: Melanie

A.S. Face 1274: Melanie

I am a 48 year old Australian living in Singapore. I was diagnosed only last year, but have had mild to moderate back and neck pain for most of my adult life. It was only when I started inexplicable pain and stiffness in other joints (hips, feet, fingers, wrists, shoulder, knees) that my physiotherapist asked if I had ever been tested for inflammatory arthritis. The increase in how noticeable my symptoms were coincided with the onset of menopause, which is apparently quite common for women with a milder form of the condition. My rheumatologist is describing mine as “undifferentiated’ spondyloarthritis for now, as my symptoms are relatively mild and involve axial joints as well as my back and neck. I have some slight defomity/loss of mobility in my thoracic spine and have a loss of range of motion in some joints, particularly my hips and shoulders. So far I just take an anti – inflammatory each day and over the counter painkillers (paracetemol / iboprofen) as I need it. I am also on a low dose of estrogen which has made a noticeable difference to my fatigue/stiffness levels ( I sleep so much bettr now!). I have a positive and pragmatic approach to managing my condition and aim to halt it’s progress as best as I can. I get lots of sleep and rest, and have a daily ritual of active and passive stretches, cold packs / hot packs and hots showers. I swim (or walk) in the pool almost every day and go to yoga once or twice a week. My doctor says the fact that I have always done yoga and swimming is probably why my back is in pretty good shape so I will be sticking to these forever! I have an understanding and supportive husband and teenage son, and am fortunate enough to be able to work part time rather than full time (as a teacher/lecturer). I would like to send a big hug to anyone newly diagnosed :) (Keep moving and keep smiling)

Regards,

Melanie

A.S. Face 1263: Ömer Kaygyn

A.S. Face 1263: Ömer Kaygyn

my name is Omer Kaygin.46 years old and living in Turkey.
i have Ankylosing Spondylitis since 16 years.

my first diagnonis was 1998,after HLA B27+ antigen tissue test results.
first times i didnt noticed what happened to me,all i knew that its was just a rheumatic disease.
but right next year i figured out that something horrible thing found me to pluck me out of life.
i couldnt walk,i couldnt sleep.dress up or bath was like torture.even i couldnt wear my socks sometimes.
than i lost my job,my career,social life and my relationship in a year.moved back to mum's house and take refuge in my family's care.

pain was killing me.i couldnt turn to my other side in bed because of pain.even i scared to sneeze and cough because my rib cage was like
explode.then i started to use non-steroid drugs and pain killers.but never enough.

i've been living this way for ten years aprox.i tried to keep stabile my health with NSAİ,exercises and swimming.i think i succeed that as far as
i can.
than i met anti TNF drugs at 2010 and started Etanercept.but i couldnt use long time because of allergic reactions.and quit.
doctors changed it with Adalimumab and WORKED :)
i am saying that with happiness because i really feel good now.
all tiredness mostly gone.i started to walk easily.bath is no more torture for me and most important thing is..i started sleep well.
at least i am not wake up and turn my other side in bed every single hour because of pain and stiffness anymore.
but unfortunately i couldnt save my posture whatever i did.i lost my backbone's shape a little :(
still..thank god anyway and keep my hopes.there is no need to lose life energy no matter what.

i am happy to be here and met with you.
i wish perfectly healthy days without pain for all of you my friends..greetings from Turkey

Turkey, Asia

A.S. Face 1237: Amar

A.S. Face 1237: Amar

Pakistan, 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 1088: Kolbe

A.S. Face 1088: Kolbe

Currently I’m trying to survive AS without any medication, a successor AS from my dad. Debating AS through my life it wasn’t be easy for me. However as right now I’m trying to survive without any pain. Pain sometime on and off. If possible, I would like to get know more people and make friends specially in my field.

Born 1978

 

Singapore, Asia