Bhushan Ghate, 45 of Nagpur has been suffering from Ankylosing spondylitis, an inflammatory disease that can cause bones in the spine to fuse, from the early age of 12. Delayed diagnosis worsened the condition for which he is completely home bound now. He runs patient support groups and helps others with a similar condition in his own way.
Challenges in Diagnosis
I am a good example of delayed diagnosis. When I first felt the symptoms of Ankylosing Spondylitis, it was in 1988-89, when I was about 12/13 years old. My earliest symptoms of AS were pain in my right shoulder and hip joint. Gradually it spread to other joints like complete hip, knee shoulder, ankle, elbow, wrist and fingers. At that time, there was not much awareness of a rheumatologist doctor. Medicines which are available now, specially biologics etc, were not available then. The first specialist we approached was an orthopaedic. And even he was not really aware of this condition. One orthopaedic in fact even told me, you are so young, how can you suffer from a problem like this? These are known to be old age issues, pains in the joints etc.
In March 1991, my condition deteriorated. Initially it was thought to be Sickle Cell Anaemia, and then Rheumatoid Arthritis, because my major joints were already affected. Then someone advised that since allopathy was not working for me, so I started trying out other forms of treatment like homeopathy, ayurvedic, acupuncture, acupressure, magneto therapy, but I did not really get relief. In 2006, I had to get back to allopathy. All my muscles from my shoulder to ankle had stiffened, there was no space between the joints, and the bones had fused. I was partially bedridden between 1996 and 2000 and completely bedridden between 2000 and 2007. I had complete fusion in shoulder, hip, knee and ankle joints. Observing this, the doctor finally concluded in 2006 that I had Ankylosing Spondylitis.
The main reason for this delayed diagnosis was the lack of awareness. Now we can google, communicate via social media and connect with groups for various conditions.
How the condition has affected your life
The delay in diagnosis in my case has adversely affected my life. My condition became worse due to lack of proper treatment which reduced my functional mobility substantially. As I gradually became homebound and bed ridden, I could neither complete my education, nor could I pursue a job thereafter. I could also not pursue a business because back then it was difficult to conduct a business from home. But unless you are mobile and can at least move around in a wheelchair, how can you devote at least 8 hours of the day to any business? Other patients who are homebound also face a similar issue. They are unable to focus on anything for 7/8 hours at a stretch.
The daily activities like getting up or lying down or even the act of eating can take up a big portion of the day. So a homebound or a bedridden patient cannot concentrate on any vocation. And on top of it, there is excruciating pain which prevents you from doing anything. Sometimes the pain can stay with you the whole year, and sometimes there are seasonal flares which cause discomfort and aches. These flares might last for months which might prevent you from doing anything constructive. This is the reason why so many with a similar condition struggle with careers as well. One cannot deny the fact, that along with the patients, the families are also affected very badly.
Co-morbidities and side effects
I suffer from dryness in the eyes. Besides that, I do not suffer from any serious co-morbidities. But I have had side effects from some with medicines. From 1996, I have tried different kinds of medications which has caused digestive issues. I have to admit that I have been guilty of self-medication. That has also caused problems for me and I would advise others to never do it. All medications should be under the supervision of a doctor. So now I have gastric issues, and my creatinine levels stay low. My BP also tends to stay on the higher side, and I have brain fog issues as well.
I also have depression and anxiety issues. I am not sure how much of all this is linked to AS or to the medicines prescribed or to me being homebound. I feel I can ascribe brain fog to AS, but I am not sure what caused depression or anxiety. It could be due to a combination of all the factors.
Also Read : She works her way around pain and fatigue due to AS
How do you deal with depression and anxiety
First and foremost, it is important to accept it when one has these issues. The general attitude of people is that the person with anxiety and depression is a “mental case” and has probably “gone mad”. Hence people either don't accept that they have a psychological issue or even if they accept they hesitate in consulting a professional or sharing it with their loved ones. As for me, I had accepted it quite early that I have these psychological issues. I even got myself treated for these. Later on, I started distancing myself from things which created problems and controversies, and I busied myself with organisational work.
My suggestion to patients dealing with anxiety and depression is that they should take time out for yourselves. If you like gardening , do that, or if you like reading, do that. I like watching movies, so I indulge in that. So even though I do have both depression and anxiety issues, I have managed to control them to a large extent. If some one talks to you roughly, the effect stays for a few days. But I try to come out of it and stay clear of controversies.
How did you handle the finances for your treatment?
The delay in my treatment cost me dearly, and had done irreversible damages to my body. Not only did it affect my family, my parents and my brother and sister, but it also meant that I could not complete my education. Here I was dreaming of becoming a CA, and in reality I could not even complete my graduation. I was experiencing crippling pain in my body, and was not able to do much. And all the members of my family had become a part of that struggle. My siblings’ education was compromised, my father’s savings were depleting fast and my mother, in trying to take care of me, had become home bound herself. And this is not just my story. Every delayed diagnosis is bound to have scary implications.
When the doctor prescribed biologics for me, it turned out to be prohibitively expensive. If now the weekly cost for biologics treatment is Rs 5000, it used to be Rs 20,000 then. I belong to a lower middle class family, and that kind of money was beyond my means. By this time, my father’s savings had all been spent, paying for my treatment. My brother, who had been working for 6 years then, came to my rescue, in whatever capacity he could to pay my medical bills and for my biologics. And because of biologics and physiotherapy, I am able to walk now inside my home with the help of a walker. My doctor now has prescribed biologics again for me now. My brother has spent all his savings on me, so now my sister, who is 9 years younger than me, has come to my rescue. Her savings plus my parents’ savings together is paying for my biologics now. But I would still say I am fortunate that I have my supportive parents and siblings around me. I know of AS patients who have almost no one to care for them. And their financial condition is even worse. Financial stability and health of a warrior is interdependent. Especially in our country where we do not get any help from the government or the insurance companies. And that is why early diagnosis is all that important, so that early treatment can at least ensure normal life for a patient, which in turn lessens the financial burden.
Your role in patient support
I have gone through the worst of AS. Only 5 per cent of people with the AS condition go through such severe effects. I thought something should be done about it - to start an NGO or a patient support group, so that people with AS can be helped in some way. I started trying to connect with people through Orkut from 2007. Then I moved to Facebook and Twitter. Then I came in contact with Tavinder Saluja from Chattisgarh, an AS patient, who started Ankylosing Spondylitis of India, the largest group for AS patients. He added me to the group as well. This group enabled me to get in touch with a fair number of people. Now we have state Whatsapp groups in Delhi, Maharashtra, Uttar Pradesh, and even in the North East and city Whatsapp groups in Nagpur and Pune. So AS patients in different cities can stay connected to each other and can help each other in terms of doctors, rheumatologists or physiotherapists.
We have also registered an organisation in 2020 in Pune called Ankylosing Spondylitis Welfare Society. Through it we are trying to help patients by emphasizing certain main points, like how delay in diagnosis can be reduced. Plus how a doctor’s sensitisation can be enabled. The first point of contact for a patient is usually the general physician or an orthopaedic. So it is important to sensitise them, because when the patient comes to them and is not sent to a rheumatologist, it causes delay in diagnosis.
We also want to concentrate on insurance issues, as we are not eligible for insurance claims. As a result, when we need to take expensive medicines, we have to pay for it ourselves. And those who cannot afford it suffer major setbacks in the condition and get confined to the bed. So these are the major objectives of our welfare organisation.
How doing this helps you and what is still challenging
As I have mentioned, I have always wanted to do something for AS patients. I have a lot of spare time on my hands and to keep my sanity intact, I also needed to talk to someone or the other. So keeping that in mind, I started sharing my number with other patients. And then I started these hour-long conversations with other patients. This was a good way to engage constructively with other patients, and proved to be an outlet for my pent up energy. When the other patient gives you a positive feedback, that he liked talking to you, you also feel positive about yourself. That is when I started reaching out to others.
Dr Shashank Akerkar once told me that some patients have shared with him how grateful they were to have spoken to me, as they were on the verge of dying by suicide. I am not bragging. But I want to emphasise that I understood the value of talking to patients in the correct manner. A patient cannot always relate to their family or friends, however caring they may be, as much they can relate to another patient. Even though AS is not such a rare condition, a patient might have trouble finding another AS patient. A patient needs that moral support from another patient, which in turn makes them feel better and they start looking at things positively. And that helps in improvement for some patients. So when a patient likes to converse with another patient, then he himself recommends this to others.
But there are certain things I have to keep in mind when I talk to patients. Firstly, I never prescribe medicines to any patient. If he asks me about the medicines I take, I share the names of medicines which have helped me. But if he asks me what should he take, I always tell him that it is the job of the doctor to prescribe medicines. I have undergone physiotherapy, so I am aware of a few things about it. But still I often avoid telling patients about physiotherapy also. That is because I am not fully aware of the condition of the patient in question. Without checking the patient clinically, it is not proper to advise any exercise.
It is not easy to start, register and get any NGO working. So that is a big challenge. And our timing of starting the NGO in January 2020 was also unfortunate, as Covid started soon after in India. We could not organise an annual meeting or physical seminars in Pune, as we cannot physically meet, and we have to conduct meetings online. Plus, we wanted to conduct educational trainings for patient leaders, which we could not carry out. We also have funding challenges which almost all NGOs face. Plus trustees have other responsibilities as well. These are some of our challenges.
If you want to follow the AS Welfare society or join the group, here are the links:
Facebook page:- https://www.facebook.com/SpondylitisSociety/
Telegram group:- https://t.me/ankylosingspondylitisWS
