Tushita Agrawal, a 16 year old from Akola, Maharashtra has been battling Behcet’s disease, a rare autoimmune condition, for 3 years now. She speaks of how she has tackled her challenges at such a tender age.
Please tell us a bit about your condition?
Behcet's disease (also called Behcet's Syndrome) is a rare autoimmune disease that affects blood vessels and can affect any system in the body. It has affected me neurologically as I have lost my sense of hearing. It has affected my digestive system as well.
When were you diagnosed?
I was diagnosed when I was 13. Presently I am 16 years old.
What were the early symptoms?
Lip ulcer and ulcers in mouth. Then gradually joint pains and other symptoms assumed huge proportions.
How did you get to a diagnosis of Behcet's? Was that challenging? How did you eventually see a rheumatologist?
Yes that was challenging. I did see my pediatrician and dermatologist in my hometown Akola and thereafter with increasing symptoms, my pediatrician and parents (who themselves are doctors) discussed and took me to rheumatologist. My rheumatologist could reach a diagnosis after running lots of tests
Read about another Behcet disease experience: Each appearance of an oral ulcer gives me a panic attack
Is there any history of any auto immune disease in your family?
No! It is only me who was diagnosd with it for the first time in the family..
What is your present condition?
I am doing well with a biologic TNF-inhibitor drug called Adalimumab. I am on steroids as well as other supplements, and I am being treated by a specialist in rheumatology, Dr. Raju Khubchandani.
Please describe your experience of managing Behcet’s disease?
Getting diagnosed as a 13 year old individual was traumatizing. It's been three long years that I am living with it.. It was never easy but I have got stronger with time. I believe in myself and my parents and sister have been a great support to me.
What medications are you on?
It's a long story! A chronic illness can be a long drawn battle. It was so traumatizing that I have tried as many as 9-10 drugs. Right now I am stable on Adalimumab. I am trying to wean off steroids under the guidance of my doctor.
Were there any side-effects of the medicines?
There are many side-effects I have been through. Most traumatizing was hair loss. I went completely bald. Honestly speaking, everytime I was judged for my condition, I have emerged that much stronger. I have certainly learnt a lot in the last 3 years.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
I have faced some challenges that depressed me, so much so that I have even considered giving up my life. What I would like to tell others who are going through similar challenges is that never believe what others say. Be confident of what you are and how you look,
Have you learnt anything in managing your condition that you wish you knew before?
To be yourself and not believing in the judgements of others.
What kind of specialists do you consult and how often?
I attend the Rheumatology clinic at SRCC hospital, Mumbai
What resources are available to you in your city to help you manage the condition?
There are no such resources in my city. So I need to visit Mumbai for treatment.
Have you had to make some changes to your lifestyle because of your condition?
I have had to undergo a lot of lifestyle changes because of my condition. Every single day has had its own share of pain and challenges. My life actually changed forever. And this condition taught me a lot. When I went bald, I was once even asked to use the Men’s washroom, because women are supposed to have hair on their heads. I stopped going to school because of my health issues. This year I intend to take admission to a junior college, and I am excited about it. But I have lost all my friends. Because their comments reduced me to tears.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
No
Has it been difficult emotionally to cope with your condition?
Yes, which is why I went into therapy and saw a counsellor.
How has your family supported you?
My parents and sister have been a great support to me. We have been through everything together.
How did your friends treat you? Did you feel isolated?
I felt isolated which is why I have not got close to my friends again. I feel my friends used to judge me everytime. I am sorry I don't want to speak more about this.
What was the hardest part of the treatment ? What kept you going? How has this changed your life perspectives and ambitions?
The hardest part is that everything feels like a tough job and everyday has its own challenges. But every story has its hero. And I am the hero of my story.
