Seba Salam

19/07/2026

"for the caged bird sings of freedom"🐦

18/07/2026

I'm excited to share that my article has been published on Nivarana recently. The article is about something I've been fighting for a long time. Deeply grateful to the entire team for publishing this piece.

Do read and share your thoughts... 💛

Living with spinal muscular atrophy taught the author that every life deserves to be seen in full. India's rare disease policy must do the same by guaranteeing equitable access to treatment.

30/06/2026

This June has been a busy month. It started off on a blissful note, giving me the chance to meet and talk with some of my favourite people whom I have been longing to see.

One of them is Prasanna Shirol . He has been a true pioneer for the rare disease community in India. I'm always so grateful to my friend ᦓꪖꪀꪖ ᠻꪖ𝕥ꫝ𝕚ꪑꪖ , who helped me connect with Prasanna sir for the first time last year.

Meeting leaders who turn personal adversity into powerful movements is a profound reminder of why we fight for awareness, better policies, and accessible treatment. 

Additionally, I was ecstatic to meet my lovely Maitreyi Hegde| ಮೈತ್ರೇಯಿ ಹೆಗಡೆ , Jyotsna Singh and Itika Singh later that week! I was so over-excited and full of energy that day that I ended up feeling exhausted for a few days afterwards. 🫣

​I also visited the hospital for a routine tracheostomy tube change in between.

However, the second half of June was quite challenging. I spent most of my time and energy trying to initiate and build some meaningful conversations and, at times, arguing with several people (and researching how to argue better too… 🙃 just kidding).

​On a brighter note, I'm greatly honoured and humbled to share that this same month, I received the Rare Star Award from the Organisation for Rare Diseases India Org. For Rare Diseases India in the category of Advocacy Leader! Although I couldn't go to Bangalore to attend the awards ceremony in person, I had the opportunity to speak to all the participants at the event via a video call.

​Just dropping some random pics of June here.

​Love to everyone who is a part of my world. 💛

28/02/2026

After the lights in my bedroom went off last night, I lay awake for a long time contemplating the different shades of darkness that enveloped me. I guess darkness in itself is a hue. And adding more darkness or light into it creates countless unique shades of it.

I live with a constant feeling that I'm a burden on everyone I love. And I guess that feeling is quite common for most persons living with disabilities. But the shades of it vary at each instance. At times, it's pitch-black, leaving you stuck with an assumption that there could possibly be nothing left to come up with, but sooner it can be also possible that you realise it changes shades again.

Today is Rare Disease Day. There have been developments in innovating treatments for different types of rare diseases during these several years. But I understand that still there are many people who don't have a clear diagnosis and also a vast majority of such diseases that have no approved treatments so far. Even for the diseases which really have approved medicines, those medicines are priced beyond reach for most people.

Btw, for any person living with a rare disease or any other type of disability, affordability of treatments can be merely one of the thousand challenges they face in their daily lives. There can be this heavy emotional baggage too that builds up over the time you keep growing up realising that you have been failing in terms of pursuing your education and dreams or being able to do a job or not being a burden on anyone, because of a body that keeps failing you.

I used to hate my body during my adolescence. I used to feel that my body always limits and stifles my soul. It was only after my teenage years I realised and started accepting and appreciating how much even my body has been suffering and fighting alongside me, just to keep me breathing.

There have been times when I have felt I'm so irreparably broken. But then there were also little beams of light that occasionally poured in to wane the darkness.

I keep hoping that today, tomorrow and the days and years and eons that follow would succeed in pouring in more and more light to the lives of every individual suffering in this world.

05/02/2026

I am so incredibly honored to share about this feature in the February first edition of , which dives deep into our ongoing legal battle for affordable and accessible SMA treatment. This isn't just my story; it’s the story of every person with SMA and their families fighting for the right to breathe, move, and live. Huge thanks to the writer for highlighting this cause, and to the photographer Shyam Babu for capturing these beautiful shots!

❤️