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Steven Jonson Syndrome (SJS) | Parthvi Mewada’s Story
Hi, my name is Parthvi Mewada and I’m a survivor of Steven Jonson syndrome. SJS is a very painful and a rare disorder of skin, it affects both skin as well as mucous membranes.
I was 4 years old when one fine day I caught fever. I was playing through out the day after my mom gave me medicine for my fever. On the same day in the evening I got fever again and my mother noticed small red dots, she thought it was chickenpox.
One of my relative suggested her to take me to a homeopathy doctor for the treatment. My parents knowing very little about what was actually happening to me, they took me to a homeopathy doctor the next day. They started my treatment. I slept after taking those pills and woke up again in the evening. I was doing fine the next day.
On the third day morning, when my mom was trying to feed me my breakfast, I wasn’t able to open my mouth and so was I able to speak. My mom tried opening my mouth to check what’s wrong and she found a lot of ulcers in there. My mother straight away asked my father to take me to the doctor who was treating me. By the time they took me and reached the clinic, ulcers were slowly spreading throughout my body and it looked more like rashes on my skin. Rashes were bloody and smelly. The doctor who was treating me asked my parents to show me to some other doctor as she was confused & wasn’t able to understand the treatment for such hyper sensitivity of the skin. My parents took to me to another recommended doctor. He said, “your daughter can’t be saved, you took a lot of time to reach out for help”. My parents were shook and so directionless at that time.
My mother decided to take me to my pediatrician. My infection was spreading gradually. Around 2 o’clock in the noon, doctor did my checkup and calmly said “it’s okay, do not worry she will be alright”. They put me under observation and admitted me. I was not able to eat, open my mouth, or open my eyes. My doctor called all the specialists from dermatologist to ophthalmologist. They examined me for a whole one day. On the 4th day, there were signs of recovery, but still I was not able to talk or eat. I used to feel burning sensations all over my body. On the 5th say, I opened my eyes and said “mumma I’m hungry”. I spoke almost after three days. My father got me something to eat and doctor allowed them to let me eat whatever I was craving for. I was admitted for more two days and then finally my blood reports were normal after almost 7 days. Doctor said that this was the rarest case, and it was his first time treating someone with this disease. He said that he wasn’t aware about the cause for this disease, it was completely idiopathic.
Surviving through SJS was much easier than facing the after effects of the disease. My eyes got extremely dry and itchy. Due to extreme dryness there were in growth hair on my eye lid, which grew almost every week and it was supposed to be pulled out of my eyes or else hair’s sharp ends were likely to damage my cornea. I used to visit my ophthalmologist every two weeks for the same. Apart from this, my eyes got sensitive to sunlight and dust and also extreme brightness of any light. I couldn’t see thro windows & I had to repeatedly use drops. I was way too young for all this. Apart from medical issues I had to face a lot of things mentally. Kids use to ask me about my eyes and it was always so difficult to explain them. Due to hyper sensitivity I used to blink my eyes a lot which did not let me look into someone’s eyes and talk. My skin looked very ugly when I used to look at myself, I could feel that my personality is getting degraded and I never felt attractive of myself because of that blood clot marks all over my body. I did not participate in any sort of recreational activities when I was a child. My immune system was very low at that time. I missed out of a lot in my childhood. My parents became more and more protective of me. I faced a lot of issues in my studies as well.
Today I’m 23 years old and I’m a physical therapist. Somewhere I choose this field because I have visited doctors for almost 20 years ever since SJS happened to me and I feel that making someone feel good about themselves is all I want. In today’s date my eyes are not fully cured. I still face dryness and hair issues, the only difference is I have learnt to live my life like that in a positive way. Being a physical therapist has taught me to empathise with patients. Today I have made myself busy in a lot of recreational activities which I missed out when I was a child and I’m very happy about it.
I chose to write my story for ORDI because I want to support patients who are victims or survivors of rare diseases. I have immense amount of respect for them. I’m a healthy individual today and I’m ready to help people get healthy and better in their lives.
NUTCRACKER SYNDROME & MALS SYNDROME
My son, 20 years old recently have been diagnosed with two rare diseases NUTCRACKER SYNDROME and MALS SYNDROME (median arcuate ligament syndrome/ celiac artery compression syndrome/ Dunbar syndrome etc.)
He had always been incredibly active and participating in various sports like football, tennis, badminton, and athletics since his early childhood. Despite his occasional complaints of shortness of breath and mild chest pain, attributed to hunger or standing for long periods, neither we nor the doctors paid much attention to it because he seemed physically fit.
As he reached 16 years old, he began experiencing weight loss and some issues with his TMJ (temporomandibular joint), which they addressed with dietary changes and precautions. However, at 19, things took a more concerning turn. He noticed dark-colored urine after walking more than 3 to 4 kilometers, prompting visits to urologists and nephrologists. Despite numerous tests, everything appeared normal except for slightly abnormal RBC counts in urine. Further investigation leads to CT scan and it shows vascular compression disorders. So start consulting with surgeons and vascular specialists, and they advised to wait and observe before considering surgery. In the mean time, he struggled to stand or walk for extended periods due to the discomfort. He is trying meditation to find solace and strengthen his mind and soul while awaiting a clearer treatment plan from the doctors.
It is very difficult to see a well active child suffering from rare medical condition.
We have no idea what will happen in future, but definitely in present time we want to spend quality time with our son and cherishing every moment together. We are giving him confidence that he can do all things what a normal person can do but with little precautions.
Thus, my son’s journey continued, with hope for a solution to his ailment and the perseverance to endure the right treatment came along.
