Seba Salam

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.

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!

❤️

2025 has been a difficult year for me. I started the year with a lot of confidence and hope. My health was stable, as I was receiving Risdiplam through government funding and consistently sticking to my physiotherapy routine. However, in February, the medicine supply halted after the Supreme Court stayed the Kerala High Court's order directing the Central Government to continue my treatment. I was still very hopeful that a way would open soon, and I expected that I would be able to manage my health for some months without the medicine. But my body didn't work well with my expectations.

​I got chest infections twice during the two months that followed. The first time, I recovered in a week's time. But the second time hit me much harder. My oxygen levels started dropping, each breath grew heavier, and I felt it impossible to get even a good night's sleep, even while using my BiPAP.

​In April, Roche started providing me with the medicine for free. Although I was very much relieved to have the treatment resumed, it took several months of effort and patience for me to recover from the setback. I will receive free medicine from Roche for three more months.

​Currently, there is a cheaper generic version of Risdiplam available in our country. But even the generic is out of reach for most patients without government funding and bulk procurement.

​For me, this year was not just about suffering. I learned a lot of new things and also made several new friends. I received a lot of appreciation and encouragement from my loved ones to move on in life.

​I wish the new year will bring more changes to the current sufferings of all persons living with rare diseases in our country. I hope the government will do the needful to make it happen.

​I wish the society, the government, and the judiciary will together work on showing more empathy, acceptance, and compassion towards persons living with rare diseases.

​I wish no patient should die longing for access to treatments.

​Happy New Year, dear world. ❤️

🎄I had a truly memorable Christmas this year!✨ I felt so honored to be visited by Sister Charles (Manager of St. Xavier's College for Women, Aluva), Dr. Milon Franz (the Principal), and Dr. Ninu Rose (Head of the Commerce Department) 🥰

In October, I had the opportunity to meet with the Kerala State Commissioner for Persons with Disabilities, Dr. P. T. Baburaj. He expressed his appreciation for my efforts in making Spinal Muscular Atrophy (SMA) treatments more affordable and accessible.

He accepted my request to the State Government to declare free treatment for all SMA patients in Kerala, and assured me that the Commissionerate would take the necessary steps to make it possible soon.

As a token of appreciation from the Kothamangalam Peace Valley, I was honoured with a golden shawl and a memento. The ceremony, held at my house, was attended by Dr. Baburaj and his wife Mrs. Reshmi, as well as representatives from Peace Valley, including Mr. Farooq Karumakkattu, Mr. Rajeev Palluruthy, Mr. Shamsu Libas, Mr. Sabith Umar, Thanal palliative members, among others. My family members were also present.

I hope that the collective efforts of society and our legal and administrative systems will ensure everyone's right to live a healthy life and to receive timely medical treatment and medicines.

https://www.theweek.in/health/more/2025/07/26/india-healthcare-rare-diseases-government-action-rare-diseases.html

Unlocking access: Addressing challenges in rare disease care in India Rare disease treatment access is a critical challenge in India, plagued by high drug costs and inadequate government financial assistance

Thank you so much, everyone, for the lovely birthday wishes! Your love and kindness truly made the day extra special 🥰❤️❤️❤️

https://youtu.be/nLBMIBO2yyc?si=hB-2hYQ7XzK4nT8n

'പ്രതീക്ഷയാണെന്റെ പ്രതിഷേധം'; SMA മരുന്നുകൾക്ക് നിരക്ക് കുറയ്ക്കാൻ നിയമപോരാട്ടവുമായി സെബ 'പ്രതീക്ഷയാണെന്റെ പ്രതിഷേധം'; SMA രോ​ഗികളുടെ മരുന്നുകൾക്ക് നിരക്ക് കുറയ്ക്കാൻ നിയമപോരാട്ടവുമായി സെബ, കേസ് അടുത്....

ഇന്നലെ, അന്താരാഷ്ട്ര വനിതാദിനത്തോടനുബന്ധിച്ച് ഡിപ്പാർട്ട്മെൻ്റൽ ഹയർസെക്കൻഡറി സ്കൂൾ ടീച്ചേഴ്സ് അസോസിയേഷൻ (HSSTA) നൽകിയ ആദരവ്…

ഈയൊരു ദിവസം ഒരുപാട് സന്തോഷം നിറഞ്ഞതാണ്. കുറേ കാലങ്ങൾക്ക് ശേഷമാണ് ഇത്രയും ടീച്ചർമാരെ ഒരുമിച്ച് കാണുവാനും അവരുടെ സ്നേഹവും അഭിനന്ദനങ്ങളും ഏറ്റുവാങ്ങുവാനും സാധിക്കുന്നത്. അഭിനേത്രിയും എഴുത്തുകാരിയുമായ@lali_ramla_muhammed എനിക്ക് പൊന്നാട അണിയിക്കുകയും മൊമെൻ്റോ നൽകുകയും ചെയ്തു. പാട്ടും പാടിതന്നു. നയന ടീച്ചറും എനിക്ക് ഒരു കവിത ചൊല്ലിത്തന്നു. പിന്നെ ഞാനും കുറച്ചൊക്കെ പാടാൻ ശ്രമിച്ചു. 🫣

കുറച്ചു കാലങ്ങളായി വായിക്കാൻ നോട്ടമിട്ട് വെച്ചിരുന്ന മൂന്ന് പുസ്തകങ്ങളും സമ്മാനമായി കിട്ടി. 🥰

എസ്എംഎ ബാധിതർക്ക് ന്യായമായ വിലയിൽ ചികിത്സ വേണമെന്ന് ആവശ്യപ്പെട്ടുകൊണ്ടുള്ള എൻ്റെ പ്രയത്നങ്ങൾക്ക് പിന്തുണ നൽകുന്ന എല്ലാവരോടും വളരെയധികം നന്ദി. 🙏❤️

ഈ ലോകത്തുള്ള എല്ലാ വനിതകളും മികവുറ്റവരാണ്. And here’s to every woman who dreams, dares, and attempts to make a difference. You are unstoppable. 💪✨