Jaswinder Banga is a 26-year-old young man who was stopped in his tracks with a sudden diagnosis of the debilitating ankylosing spondylitis. While waiting for his critical surgery, he shares his travails since the diagnosis.
Please tell us about your present condition. Can you describe it?
My present condition is that I am confined to the wheelchair and completely bedridden for the last 3 to 3 and a half years due to severe deformity in hips and knees. Also, my legs are intertwined. This is because I have been diagnosed with ankylosing spondylitis. I cannot get up on my own and I need assistance 24/7.
What were the early symptoms? What made you go to a doctor?
Almost without any run up to the condition, my back pain and hip pain started in 2015 when I was still in my boarding school. I was perfectly ok prior to that, except for an attack of jaundice some 6 months back. I felt the pain when I would wake up and a stiffness in the back when I walked. The paramedical staff of the school gave me painkillers and multivitamins. I also started losing weight and suffered from loose motions. I took leave from school and came home for treatment. The local medical practitioner gave me some type of painkiller and referred me to orthopedic doctor
When and how were you diagnosed? What tests were done? How did the diagnosis come about?
My hip X ray and blood tests were conducted. The hip x ray was ok, but my calcium level was low. The doctor prescribed Vitamin D and Calcium tablets, and I got relief for about 6 months.
After that, my pain flared up once again. I went for acupressure again, and I also consulted the orthopedic again. My calcium and vitamin medication were repeated.
What happened next?
My treatment process started in June 2017, when after taking a look at my MRI report, the doctor suggested that I should go for an HLA B 27 Test.
The HLA B 27 test was positive. Then the doctor referred me to a different city, Chandigarh, for treatment, because in my area in Punjab there is no rheumatologist available. And I suffered travelling 100 km from my city to visit another city hospital by bus, which was physically challenging for me. I consulted the rheumatologist, and he prescribed for me some blood tests, ESR, CRP, CBC, as well as CT Chest scan and Dexa scan. Through all these tests, the rheumatologist finally concluded ankylosing spondylitis in 2017.
What was your reaction to the diagnosis? How and when did you break it to your family?
I was shocked with my diagnosis, I could not believe what was happening to me and how would I manage it lifelong.
Did you have pre-existing health conditions?
I did not have preexisting health conditions as such and was leading a normal life in all respects. But I did have jaundice, as I have mentioned before.
What stage are you in now? Has the ankylosing spondylitis progressed?
I am now at a stage where my lower spine is fused, both hips are fused, and the knees are also fused. Left hip is fused in external rotation and right hip is fused in internal rotation.
What medications are you on? Pls mention all medicines and indications of each.
I am on etoricoxib medicine, and I have also been on ayurvedic medicines previously. Till Covid, I was still ok and moving around. I was on etoricoxib then but discontinued with the ayurvedic medicine as it was not readily available during lockdown.
Till last year I used to take iron capsules, but not anymore. The other medicines that I used to take till last year were vitamin B12 tablets, pantoprazole 40 mg tablets, calcitriol capsules, and iron + folic acid + B12 capsules. I will only be prescribed the next batch of medicines after my surgery.
Were there any side-effects of the medicines? If yes, how do you manage them?
Not as such. Sometimes palpitation of the heart etc. But from ayurvedic medicines, in the heat of summer, I have ended up with chicken pox.
What is your treatment pattern? Besides medication, what else do you do to heal and improve quality of life (diet, nutrition, exercise)?
With more awareness of the condition I am suffering from, I started on anti-inflammatory diet, with less carbohydrates. Rotis made from millet and baajra, less rice and potatoes, bhindi, carrots etc. I also take eggs sometimes when it is less hot. With medication, my pain has decreased, so I have some milk too sometimes. But I keep my diet light, because I cannot move around and cannot do any exercise. I have fruits like pomegranate because my hemoglobin stays low. I also take fruit juice sometimes.
Have you had to make some changes to your lifestyle because of your condition?
Yes, everything has changed because I’m wheelchair bound.
What kind of assistance do you require in your daily life? And how do you maintain hygiene, given that you are confined to the wheelchair?
At present, I’m not able to move out of my bed most of the times. I cannot move my body beneath my shoulders, so all the exercise I can manage are neck and shoulder exercises, and sometimes anulom/vilom.
I was studying pharma, before ankylosing spondylitis hit me. So, I have some basic knowledge about maintaining hygiene with anti-fungal powder and I also have a bath from my bed every 2 days.
Have you tried alternative medicines or therapies, like ayurveda, homeopathy, siddha?
Yes
Do you have a family history of this condition? Was genetic testing done?
No, I have no family history of this condition.
When did you break the news to your friends and distant relatives? How did they take it?
Everyone was shocked but they assured me that I will get better.
What kind of specialists do you consult (including Physio/ Occupational therapist/ Psychiatrist etc.) and how often?
Last year in 2024 I went to Chandigarh to discuss about hip replacement. They said my condition critical. There is a doctor from Delhi who comes to Punjab for OPD. He said hip replacement is possible and that I will be ok after the operation following some physiotherapy and exercises. I have been suggested to go for bilateral hip replacement and after that knee replacement.
What are you worried about for the future?
I hope I can go ahead with my surgery. I have been given to believe that following the surgery, with almost 2- 3 years of regular physiotherapy, I will be able to walk again. My father is an e rickshaw driver and my family’s only source of income is my father. My future is dependent on my surgery. I am a pharmacy diploma holder. But I had the pain attack before I could complete my internship. After my surgery, when I’m able to walk again, I want to complete my diploma internship. At 26, when others are chasing dreams, I am fighting every day just to stand and walk again. My only dream is simple — to take a few steps on my own feet and serve people through my pharmacy knowledge. I believe with the right support and God's blessing, even the hardest battles can be won. I don't want sympathy — I want a second chance at life.
Dear Reader: If you would like to support Jaswinder Banga, here is the fundraising link
As told to Moyna Sen
