Aqsa, a 17 year old from Mumbai, shares her journey of navigating Juvenile Lupus as a young teenager, including understanding the disease and seeking the right treatment. Key learnings are accepting the side effects of medications and the importance of family and social support.
Symptoms, Diagnosis and Treatment
I was first diagnosed when I was 12-13 years old and in 7th grade. I had swelling on my feet, but was too young to understand the disease. I went to Judo classes and had joint pain, pain around thighs. I would feel tired, but still couldn’t find out if the pain was due to the Judo or due to any other disease.
My mom had issues with thyroid and thought I had thyroid issues too and consulted a Rheumatologist.
We felt she was a little bit rude and wasn't cooperative so we didn't feel like going to her She asked for blood tests and the ANA test.
After that I developed rashes on my feet and chest and used to get fever after every 2-3 months. I had joint pain on my knees and hence had to walk really slow. A kidney biopsy was also done as soon as I developed rashes on feet and chest, after which I was diagnosed with Lupus Nephritis, class 5. I was also diagnosed with Arthritis and Thyroid issues. After 1-2 weeks I had moon face (due to steroid medications), rashes, bruises on ankle and pain on knee and thighs. My treatment included HCQS – HydroxyChloroQuine.
We then found a better rheumatologist, through my uncle. This doctor was amazing, understood the situation and explained everything clearly. I am now consulting with the same doctor for 5 years now. I am currently 17 years old.
Last year in August, my nerves got damaged due to lack of blood supply and I couldn’t move – it was diagnosed as Mononeuritis Multiplex (MNM). There was a burning/ticklish feeling on feet and sudden pain in heels. Once I was completely paralysed and I was about to fall from the bed. I couldn’t even move my feet or wear my slippers.
During the last episode of MNM, when I was hospitalized for 2-3 days I lost 8 kgs, lost my appetite, couldn’t move my feet, fingers were disabled. I was bed ridden for 2 weeks. After 3 months I went to college. I couldn’t walk as fast, couldn’t eat myself. I am 100% recovered now. I was given steroids and 2 doses of Retuximab that helped with my MNM episode.
Some of the side effects of medication that I have had to deal with are moon face due to steroids, skin tanning due to HCQS. I also feel a bit fatigued and tired because of the amount of medication.
Social Medical and Family support
I have completed 12th grade and tried my best every day in school and have now started college. My school and college is fairly close to home. Some days I have been so sick with fatigue that I couldn’t even wake up and had to miss school. This has happened from the time of the diagnosis.
My close friends knew about my condition. They helped with my studies. Initially I couldn’t really explain Lupus to my friends as they couldn’t even understand and pronounce Lupus. Also I didn’t want to appear with disease and use an excuse of leg pain.
Only when I grew up around 14 years, I decided to explain this to them - that my feet ache, I have joint pains and hence need to walk slowly, that it is an auto-immune disease. My class teachers knew as I had to take permission to carry an umbrella for a field trip, to avoid sun exposure.
I have 3 older siblings. Thankfully my family is very understanding, especially my brother who does not force me to be someone else and remain active like others. My mother also helped and supported me a lot, for example when I had kidney biopsy, she helped me in changing clothes and took special care of my hair.
I did not receive much support from relatives. In fact I haven’t told some of the relatives as they now have questions on who will marry me, will I be normal again, will this disease be cured and how will I live my life.
I got to know of Lupus Trust last year. I was looking for what Lupus is as I did not know details of my disease and was not sure if there was any cure, and while looking for information I found the video/ podcast by Lupus Trust Co-founder and then followed her on Instagram. I wanted to share my Lupus Journey, but my mother was skeptical and felt it wasn’t important. Then I decided that I have to join in the effort to spread awareness. After doing that I got in touch with so many others with Lupus and that made me feel that I was not alone.
Emotional and Psychological impact
I suffered from joint pain mainly on my knees and hence walked slowly. I couldn’t be as active as my friends and it hurt that I couldn’t do what others did, couldn’t participate in dance activities. I feel bad about being disabled.
I am very emotional and cry very easily. My elder brother (7 years older) keeps pacifying me and asks me not to listen to any comments, and always reminds me that I am intelligent and smart. My mother also keeps telling me I am strong, which is quite comforting and encourages me to manage any comments from relatives and friends.
After I connected with Lupus Trust and shared my story via the podcast and I felt different and strong and that I am not the only one going through this struggle. My mother also noticed the difference in me and mentioned that I was getting more mature After seeing my podcast a few friends texted and called me to say I am so strong. That made me feel much better and made me think and feel happy that I was actually inspiring so many.
Planning ahead:
Lupus has changed my life in a negative way. I am always tired and fatigued. Sometimes I want to hang out with my friends, but can’t make it. When I do hang out with them in the afternoon, my friends are very supportive and ask me to sit down whenever I feel tired. Fortunately I have no restrictions on food so that is good.
I need to constantly be aware that I am living with Lupus, an autoimmune disease. I need to be careful and plan in advance. Even simple things like asking for permission to carry an umbrella for a picnic since sun exposure can be a trigger for Lupus flare ups.
I wanted to be part of a dance program and couldn’t due to Lupus.
I am not ready to give up. I want to be a voice or dubbing artist and despite all the challenges, I completed a voice acting course. I also like reading books and watching movies. In the future, I want to complete mass media course
Key message
Always stay strong and positive. It is quite difficult, but keep telling yourself that it’s just a phase. Don’t get discouraged and stop your medication. I stopped medication when I was young around 13-14 years, and then the joint pain came back.
My message to the Juvenile Lupies – Lupus medication can cause swelling and make you look chubbier which can affect teenagers and make them feel insecure. But remember – “Everything will be ok and looks are not everything”
From my own example, when I was 15 and was putting on weight, I went on a crash diet. I wasn’t eating enough and was having so much medication, I started looking so weak and skinny – lost about 4 kg but then regained it back. I lost all my face fat and all the glow and also started losing a lot of hair. Then I realized there was no point in doing this.
My Best experience was getting connected with Lupus trust and watching the podcast and the second best moment was when my brother said I was strong and inspiring in terms of how I was managing with Lupus
My Worst Experience was this year when in 12th standard I was hospitalized and hence couldn’t focus on studies and did not really score well but I will not give up.
