Amita*, a 20 year old working woman from Mumbai, with a diagnosis of Juvenile Lupus shares her experience of dealing with this condition, the emotional and financial toll it took on her and how she has come to realise the importance of medication adherence.
Symptoms, Diagnosis and Treatment
It was around 2018 when I was pursuing my SSC and one day when I came home my mom saw a bald patch in my hair. Like a bunch of hair somebody had cut it off. So we panicked and after visiting a dermatologist he gave medicine and lotion for alopecia areata. I continued the medication for 6 months and then left it.
After a couple of years, in 2020, suddenly my hair fall started all over again and this time there were many patches and I lost my hair to a great extent which made me depressed and sad. I didn’t attend my 10th Farwell and this time I missed my 12th farewell too because of depression. My hair got so thin I couldn’t even tie it up.
The main symptoms I had which started in September 2020, were hair fall, headache, ear rash, face rash (redness), mouth ulcers due to which I was not able to eat anything which was more troublesome.
While I was going for the treatment for alopecia areata with a lotion and prednisolone in 2020, I had my boards also for 12th and while writing papers the joints of my fingers used to pain and get stiff. So on the next visit to the dermatologist, Dr. Durve I informed him about this and he told me to visit a rheumatologist as I was having joint pains. I checked the charges and other things like availability of rheumatologists, it was too costly. But later when my pain increased and started to happen more often, Dr. Durve once again suggested me a rheumatologist, Dr. Shailaja Sabnis and gave me her contact details. Then I called the doctor and took appointment.
After the visit to Dr. Sabnis, she suggested many blood tests like ANA blot - Ds DNA, Blood Urea Nitrogen (BUN), creatinine, C3, C4, Urine routine, which were done and continued the same medicines from June 2020 to Sept 2020. For 4 months I followed her advice and within those months after reports came back, we got to know that I was having SLE. So she started the medicines and steroids accordingly – Mycophenolate Mofetil (MMF), Hydroxychloroquine - HCQS, Prednisolone, Folic acid and Calcium supplements, Tacrolimus 1mg, Vitamin D supplement.
A blood test which was told to be done by doctor with ANA blot—Ds DNA was done. However, there is no one in my family or in the past had the issue. I still don’t understand how it all started.
But as the medicine and consultation were too costly, I had to stop visiting doctor because of financial problems. Plus it was almost Covid 19 time and I was in my 12th standard too. Without informing Dr. Sabnis I stopped going there and stopped medicines as well and was at home for 1 month.
I did not having the courage to tell my parents about SLE especially that it is not curable, as they are still having a hope that one day it will get cured completely and my medicines will be stopped.
One of my friend/neighbour was a homeopathy doctor and he provided me homeopathy medicines for 1 year from Sept 2020 to Oct 2021. The homeopathy Dr. asked me to continue the last prescription of Dr. Sabnis and also the medicine which he gave. But my condition got worse month on month. When I used to sleep at night and when I got up anytime in the night or morning, I had to first spit blood from my mouth and put water then only my mouth felt clean. The mouth ulcers were so much and also the weight loss, joint pains were still there, hairfall was also there. But still after Oct 2021 to Jan 2022, we started paying the homeopathy doctor on monthly visit in the hope that at least now it will get cured. But the condition got so bad that I was not able to walk and was fainting all the time, ulcers were also there in my ear and was not able to hear.
Emotional and Psychological impact
There was weakness and medicines all the time, parents were scared of sending me outside of home. I had depression, headaches, and because of so many problems in between I tried to attempt suicide also because I felt treatment was way too costly and it was lockdown time. But my parents and family supported and handled me and I learnt to avoid the negative thoughts and passed the days, thinking that I will also have a better tomorrow.
After all this my father told leave all the finances and go to Dr. Sabnis again. This is when I stopped the homeopathy too.
After February 2022, when I visited Dr. Sabnis again she got angry and told me not to skip medicine as my condition had got really worse. She gave me medication and advised blood tests– CBC, ESR, C3, C4, Urine routine, BUN and asked me to come back for a follow up consult after a week. I did the test, but before the week I had so much pain that I had to visit her late night 9pm on 23rd Feb 2022 at her personal clinic. She saw the recent reports and said my condition was very serious as my white blood cells were around 1000 when it should at least be 7000. She informed my sister and mother to get me admitted immediately on emergency basis. I got admitted to Holyspirit hospital Andheri east that night itself. I was not aware enough to understand what all was done. My sister was there and she knew all the treatment that was started and after almost a month in hospital I got discharged in March 2022.
I still had suicidal thoughts as I thought that I was a burden to my family, with so much expense and hospital issues and my family were going through a tough time with me. It was difficult for me to come out from my situation.
But after many poojas and family support, I stopped the thought of suicide and tried to understand and accept my condition and started believing that I could handle it. It was then that I searched on social media. I followed the page of Lupus Trust India and read many inspiring stories which motivated me and gave me the belief that I will also be alright one day.
In July 2023 my college started for 15th Std and I was pursuing Bachelors in Accounting and Finance. In Aug 2023 I got to know that my college had a counsellor who visited college every Wednesday and I decided to visit and consult her. I did not tell my family and they still are not aware that I had visited a counsellor.
Family Support, Work balance, Management of situation
Though there were financial problems, my family was very supportive and tried to show that there were no such problems and that I’m not the burden on them and tried to make me happy in every way they could.
I am trying to work with my condition now patiently. During lockdown I used to learn new things like focusing my day to learn mandala art and how to knit woolen sweaters. Later when college started I started focusing on my studies whole day. Though I was having all this I stood 1st in my college in my overall 15th std. I have handled so much stress since 10th std, when I was just 15 years old, I am now learning to handle my moods.
Currently there are no symptoms or any flare for some time. In fact, Dr. Sabnis mentioned to me that the wolf (SLE) is quiet now so let it be calm.
I am hoping for no flare up in future and even if do get any, I am praying to God to give me the strength to handle and manage it.
At work I have informed my Team leader about my condition and she allowed me to visit my doctor every month. But my working hours are long from morning 8.30am to 7.30/8pm, so I am considering switching jobs now.
Key message
Please try to understand that along with you, your family is also in the same condition. Learn about your condition. Try to be strong, positive and motivated.A Lupie needs so much strength and mental support to handle and manage the condition. Being patient and calm is more important and giving time for the disease to get in control and to take the medicine to reduce the flares.
* name changed on request
