Delving deeper into the experiences of people with Rare Diseases and Disabilities
Imagine having a stomach discomfort that you shrug off as nothing more than a stomach ache, but after contacting a doctor and getting examined, it turns out that you get to name the disease! Rare diseases affect a small fraction of the population and do not have much laid out medical equipment and procedure for treatment.
Here we bring to you a true account of Rachit Mittal, who is suffering from Isaac Syndrome, a rare neuromuscular disorder that is characterized by progressive muscle stiffness; continuously contracting or twitching muscles (myokymia); and diminished reflexes. He aims to create awareness around such rare conditions by disseminating information and kindling hope and strength in the patients.
It was a horrifying evening walk in 2016 that changed my life when I got trapped into leg cramps with an aggravating pain in the lumbar region. My night was painful and unaware that my encounter with time had just started.
A plethora of clinic-aid investigations was done before being diagnosed with rare diseases like Isaac Syndrome (a diverse disorder as a result of muscular hyperactivity), Membranous Glomerulonephritis (a slowly progressive disease of the kidney), Lymes (a bacterial infection that can be spread to humans by infected ticks), and Glaucoma (an eye conditions that damage the optic nerve often caused by high pressure). The diagnosis followed extensive therapies including Steroids, Plasma exchange, ACTH injections, and much more. Thirty-eight pills were a part of my daily acid-tasting platter, accompanied by food restrictions. Regular episodes of IBS, diarrhea, body pain, weakness & muscle loss were claiming rights over me. Fluctuations in sugar levels, blood pressure and weight surfaced. I had to change my wardrobe as weight melted off from 80kgs to 57kgs. I lost my appetite and wouldn’t feel hungry post-lunch until 8 am the following day.
Though my journey has been a mixed-bag sketch with a complete transformation in my cultural and socio-economic state, food-habits, financial and health reputations, I’ve come a long way from being bed-ridden for almost two years to being more independent. As I write this article, my food-habit curve shows signs of normalcy, the clouds of skepticism have withered, and a sure-shot reduction in medicinal intake is around the corner.
As Bear Bryant once said, “In a crisis don’t hide behind anything or anybody. They’re going to find you anyway.” I took the challenge of trying to break free by shifting the doctrine of focus towards positivity, as conquering challenging situations is complex but not impossible. Though there have been many trials and errors, all the struggle has seen me grow and raised my bar of confidence to emerge from unexpected demanding situations.
Mahatma Gandhi once said, “You must be the change you wish to see in the world.” Therefore this is not only about my journey but coming together for a cause as a voice taking ownership to infuse awareness and remind ourselves that a patient’s journey begins much before diagnosis.
A Rare Disease (RD) is one that affects fewer people across a broad range of possible disorders. According to the World Health Organization (WHO), the number of people involved with RD are less than 5 per 10,000. These ‘Casanova typed diseases’ need special lenses as symptoms are diverse, leading to cases being under or misdiagnosed. A draft report released this year by ‘The National Health Policy for Rare Diseases’ acknowledges the annual cost of some treatments may vary from Rs 10 Lakhs to more than Rs 1 crore per year.
To get a better understanding of the facilities and atmosphere available for the PwD students at the institute, we interviewed Mr. Vikas Kumar Jha, a final year PwD student at IIT Delhi.
Q1. It would be great to have a short introduction of yourself from you, Mr. Vikas.
Yeah, Sure. I am Vikas Kumar Jha, and I hail from the city of Darbhanga, Bihar. I completed my schooling at Jawahar Navodaya Vidyalaya, Darbhanga. I had shifted to JNV, Pune, for a couple of years, in class 11th and 12th, for my JEE preparations. I joined IIT Delhi in the year 2017, and currently, I am in my final year and final semester. The journey at IIT Delhi has been a fantastic experience, though the last two years have been online. I cherish all the memories and learnings I have had at the institute. Speaking of online semesters, I would like to share that I had, in fact, onboarded in the month of February ’21, but unfortunately, I had been infected by covid and had to head back home soon. Right now, I am healthy and onboarded. I have been working on a project under my guide and have been enjoying it.
Q2. That’s Amazing! I would love to know about your childhood experiences and any memories you vividly remember.
There are so many memories that I still cherish and will do forever. Growing up, I wasn’t a very studious kid, and even teachers used to scold me back in the days I remember. Though, I absolutely loved playing Galli cricket, along with the boys in my locality. We were kids, and the bats were small and lightweight, So it wasn’t difficult to handle. I miss those days. This was up until my 5th class, I joined JNV in class 6th, and I had to stop playing outdoor sports as there was a constant fear that I might get hurt. After joining IITD, I have been a very active carrom player and represented my hostel in various competitions.
Q3. What’s your journey been like after joining IITD in 2017, and what activities were you part of at the institute?
In my first year at the institute, I was super introverted. I had a room on the ground floor, which is reserved for the PwD candidates, and there were two such rooms in my hostel. I stayed inside my room for a significant part of the time and didn’t happen to talk to a lot of people. There was another PwD student in the other room, and we became good friends. I, in fact, happened to speak to the Ph.D. students that lived on the same floor as mine. The students from my batch were on the third floor, so I didn’t happen to have a lot of hostel interaction with them.
I became a part of NSS and was working under the Vidya Project. We visited the small areas near the institute and taught the children there. After some days working under the Vidya Project, the children in those areas started recognizing me and called me by my name, shouting “Vikas bhaiya!” which really made me happy. Since then, I have been a part of NSS, and it was a wonderful experience. Apart from that, as mentioned earlier, I played carrom.
Speaking of my experience at the classes, I had been issued an electric wheelchair by BSW, which I used to travel to and from my classes. I can walk without a wheelchair for a shorter time, but I can’t walk any longer paths or stairs. That gets exhausting.
The infrastructure at IITD is really PwD friendly, you’d see ramps in the majority of the buildings, and since I’ve joined the institute the facilities have been getting only better. I have thoroughly had fun in my classes, and the professors were excellent! I had been inclined towards preparing for UPSC, and I still am, but there had been a halt in my self-study sessions for it due to the lockdown. Moreover, I have been focusing on my institute academics more since.
Q4. How inclusive do you feel whether the culture is at the institute?
Personally, I am introverted and didn’t speak to many people, but whenever I have or happen to, it has been a lovely experience. Interactions happened with seniors at the hostel and peers at NSS, and I should say that people are amazing, very supportive, and super-friendly. Even the guards around the campus helped me when I needed it, even in the slightest. Though, I regret being under-confident in my initial days. I still feel I should have made an effort to join more cultural clubs and activities, which would have allowed me to interact with more people. Even with educational opportunities, I have never experienced any discrimination of any sort. In fact, all the facilities are provided to study as and when we would like to, and all our issues are taken care of. I was issued a wheelchair, but I see that even there are facilities for other persons with disabilities. People with visual impairment have separate classes, and they are even provided with the study material in braille.
I do believe that there are many facilities for PwD students at the campus that even students are not aware of. Often, I see that PwD students are conservative and don’t happen to talk to many people. Hence, they miss out on the information regarding the facilities available for them.
Q5. What would be your message to all our readers today?
I would like to convey this to the Persons with Disabilities who are in the institute and will join soon to make an effort to talk to people around and interact more. IIT Delhi has a very inclusive environment, but you need to get yourself out there and experience it yourself. Don’t be under-confident as I was and try to participate in all the activities you can. You will find amazing friends who share the same interests as yours and you will spend some golden time of your life here if you do the same!
Also, I want to convey to everyone at the institute that I am really grateful for you people being around, and I have had an outstanding experience being here. Thanks for being so supportive, and I am happy to have been a part of such an amazing community.
IIT Delhi has set up various schemes and insurances to help students with medical expenses, such as Medical Insurance, Student Distress Fund and Benevolent Fund Scheme.
1. Medical Insurance
The Policy covers the students for following Risks:
Group Mediclaim Policy (GMP) coverage: ₹ 1,00,000/- per student
Group Personal Accident (GPA) coverage: ₹ 50,000/- per student
A buffer of ₹ 7 Lacs - Max. up to ₹ 1 Lac per student on the recommendation of Dean/Asstt.Registrar/any other Authorised official.
2. Student Distress Fund
Created from donations in the form of aid from alumni/ willing organisations/ individuals and well-wishers, the fund helps students’ emergencies in terms of sudden critical illness, accidents and life-threatening diseases. Every semester a minimal amount ₹ 100 is collected from all the students.
3. Benevolent Fund Scheme
An outright grant of ₹ 3.00 lakh is paid from the corpus of the Benevolent Fund in case of death of an employee or student due to an accident anywhere in the world while on duty or while undergoing studies at the Institute.
The institute has also taken various steps in providing accessible education facilities to everyone including people with special needs, most recent being the creation of the Office of Accessible Education.
The newly set up Office of Accessible Education has made a modest start over the past few months in providing some support to students with disabilities.
Xavier's Resource Centre for the Visually Challenged is providing intensive training to a student, creating accessible study materials as requested. Scribes and compensatory time are routinely offered by the Dean (Academics) office and Office of Accessible Education to over 130 students on campus.
Much work is being undertaken regarding providing mobility services in the campus, and creating a pool of student volunteers who can help create accessible study materials and provide other support to persons with disabilities on campus.
– With inputs from the Office of Dean of Student Affairs