K.S. Sangeetha, 29 from Chennai has been living with Lupus last 14 years. She even had to go through with a kidney transplant last year. Sangeetha talks about how she handled both conditions.
Please tell us a bit about your condition
I have a condition called lupus which is an auto immune disorder. I was diagnosed in 2005.
What were the early symptoms?
Early symptoms of Lupus were extreme hair fall, fatigue, persistent fever, swollen joints and severe joint aches.
We also have no history of Lupus in our family.
Please describe your experience about managing the condition
Managing this condition is very challenging unless we have a mind set of accepting life as it is. We have to make sure that we follow our doctor’s advice and also that we have a fighting spirit to help us see through the difficult times.
What medications are you on?
A few years back my kidney started getting impacted. At present I am on anti rejection medicines so that my new kidney doesn't get rejected.
When did the doctors advise you for a kidney transplant?
The doctors advised me September first week of 2018 for a renal transplant
How did you go about it?
My mom donated one of her kidneys to me and we had to make sure that all the tests were to be done as per the doctor’s advice.Without any delay, we arranged all the documents and made ourselves ready for the surgery on the given date.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
I had to face a lot of challenges as I suffered lupus from my childhood. I was lambasted and questioned a lot about lupus because people were mostly ignorant about it. I could not attend school regularly as I used to feel very low. My advice to patients who face similar challenges is to move on and make sure that you keep yourself calm and happy and never ever give up in any situation
Have you learnt anything in managing your condition that you wish you knew before?
Yes a lot. I wish to tell others just don't bother what others talk about you. Stay focussed and live every moment. Life is very precious.
What kind of specialist do you consult and how often?
I consult a nephrologist every month
Are there myths regarding both lupus and a kidney transplant that need to be busted?
Yes there are myths regarding both which need to be dispelled. It is a myth that people with lupus do not survive long. But, in reality, with proper medical attention they can live longer lives. Normal people who get renal transplants do as well as those with lupus nephritis, both categories actually can stay well even after transplants.It is just that they have to take anti rejection medicine regularly.
What are the least understood aspects of Lupus?
Generally 90 per cent people do not understand what is lupus, and the rest 10 percent believe it is communicable. Doctors are of course the exceptions here.
Have you had to make some changes to your lifestyle because of your condition?
Yes a lot, mainly by increasing my brain power to face the tough situations along with diet control.
Have you tried complementary medicines or therapies, like homeopathy or yoga?
Yes I tried, but it did not seem to have any beneficial effect for me. So I feel only treatment is through allopathy.
Has it been difficult emotionally to cope with your condition?
Yes, it has been difficult. As a teenager every young girl wants to look beautiful but our face becomes swollen (moon-faced). People start asking us what happened. I missed my regular school days, college days, going out with friends. Everytime there were complications, we needed to rush to a doctor.
Most importantly, during my Xth and XII board exams, I had to do everything as auditory learning. My mom used to read my text book as I lay on bed listening to her. Despite all this I completed my post graduation in mass communication. I could not follow my passion which was media as my health did not permit, but I am happy now that I am a part of it now. And following my dream.
How has your family supported you?
My family gave me more than I expected. They stood beside me like a pillar. It is difficult for any person with a condition like lupus to carry on without family support.
Did you see a counselor for support? Were you offered counselling by doctor?
My parents have been my cousellors.
What was the hardest part of the treatment? And what kept you going?
The hardest part was hemodialysis which went on for four years.But my parents’ love, doctors’ support and my own confidence have convinced me that it is a battle that I have to win..
I follow my doctor’s advice very diligently. I also have a mindset that I can achieve anything. My positive thinking and my spiritual inclinations together with my passion for dancing keep me going.
How do you keep yourself engaged?
At present I have my online boutique which is exclusively for bridal lehengas , western dress and variety of sarees. I have my you tube channel and I do choreography for different genres of dancing. I have also performed live on many occasions., I also work as a Motivational speaker, actor and a model. Even after my renal transplant, I have done various shoots and have even acted for a web series for Zee 5.
