Epilepsy A Disability

23/05/2025

🧠 EPIL-E-THOUGHT 💭



Over the past few weeks, I had the opportunity to share a proposal that reflects months of dedicated research and lived experience on improving how epilepsy is recognized within the disability framework.

The intention behind it has always been positive, to contribute constructively to ongoing efforts toward inclusion, equity, and dignity for persons with epilepsy.

I fully respect that everyone has their own priorities and limited time. While I haven’t received any response yet, I understand that things often take time to process.

Still, this moment gives me a chance to reflect and gently ask:

👉 Are we truly working together to build a more inclusive and responsive future for people with epilepsy?

I remain committed to respectful collaboration and open dialogue. Every small step, even acknowledgment, can encourage individuals like me who are trying to contribute meaningfully.

Let’s continue building bridges where all voices are valued, and collective progress is possible.

http://epilepsyfriend.blogspot.com/2018/10/general-information-about-epilepsy.html

With hope,
✍️ Rahul Karandikar

Exploring a Holistic Approach to Epilepsy Disability in India A Perspective from Lived Experience By Rahul Karandikar Epilepsy Advocate |...

03/03/2025

Transparency Matters in Epilepsy Research & Disability Certification!

I recently discovered that the data I contributed for the Epilepsy Disability Certificate was taken up for study by a Disability Team in a government hospital in Mumbai without my knowledge! The doctor to whom I submitted the information never informed me that they had begun analyzing it.

It was only when I directly asked about their findings that I came to know my data was already under study. While I fully support research and efforts to improve the disability certification process for epilepsy, shouldn’t transparency and consent be the foundation of such work?

As individuals with epilepsy, our experiences and contributions should be acknowledged, respected, and ethically handled. If we share our data in good faith, we deserve to be kept informed about how it is used.

This raises important questions:
✔️ Shouldn’t there be proper communication with contributors?
✔️ Shouldn’t those impacted by epilepsy be included in discussions regarding disability evaluation?

I hope this incident sparks a conversation about ethical research practices, patient rights, and the need for more inclusive policies in epilepsy disability certification.

14/02/2025

13 signatures are still needed! "Revise Guidelines for Epilepsy Disability Certification: Ensure Fair and Accessible Asses

14/02/2025

DRE Surgery Awareness Group

This informal group was created on the suggestion of Doctors related to NESSAN'S (National Epilepsy Surgery Support Activity Network) Neurology Department to educate Drug-Resistant Epilepsy (DRE) patients about how surgery can help manage their condition.

🔹 What is DRE? Epilepsy that doesn’t fully respond to medications.
🔹 Purpose: Share knowledge, experiences, and guidance on epilepsy surgery.
🔹 Who can join? Patients, caregivers, and anyone seeking information.

Feel free to ask questions, share experiences, and learn from others. Let’s support each other on this journey!



Join Here:

06/02/2025

06/02/2025

Can you add your signature? ✍️
https://chng.it/vvt8BMyTx4
Please make all PWE'S sign this because the government has updated the Guidelines for PWE but many government hospitals are not aware of this.

"Revise Guidelines for Epilepsy Disability Certification: Ensure Fair and Accessible Asses

06/02/2025

[06/02, 6:22 am] Rahul karandikar: Can you add your signature? ✍️
https://chng.it/Y5xPSqBWrS
[06/02, 6:23 am] Rahul karandikar: I have created a petition for proper assessment and evaluation process for Disability certificate for person with Epilepsy. Please sign
[06/02, 6:35 am] Rahul karandikar: Can you add your signature? ✍️
https://chng.it/vvt8BMyTx4

"Revise Guidelines for Epilepsy Disability Certification: Ensure Fair and Accessible Asses

04/02/2025

Hey everyone, I wanted to share some important news: Epilepsy is now officially considered a disability based on a scoring method. However, not everyone with epilepsy may qualify, as it depends on specific criteria. If you're interested in knowing more about the scoring and whether you might qualify, feel free to contact me at 9967632110. I'm here to help!

06/11/2024

If media or society primarily highlights accomplished individuals with epilepsy, it may unintentionally set a high bar that feels out of reach for someone managing the condition daily. While inspiring, it can create unrealistic expectations or make someone feel inadequate if they're not achieving similarly extraordinary things. For those facing the everyday challenges of epilepsy, seeing only high-profile stories might also create feelings of isolation, as it doesn't represent the full spectrum of experiences.

A more balanced approach, sharing stories of people with epilepsy from all walks of life, whether they are managing work, relationships, or personal growth, can be far more relatable and encouraging. It reminds people that success is not defined solely by extraordinary accomplishments but also by resilience, small victories, and finding stability and happiness in daily life.

Would you find it more empowering to hear stories of people with epilepsy leading ordinary lives, facing similar challenges?

01/11/2024

*November's Call*

November comes, quiet but strong,
To bring epilepsy out where it belongs.
In homes and streets where people hide,
We spread the word, far and wide.

In temples, schools, and busy towns,
Where fearful looks can bring them down,
We lift our voices, bold and clear,
For those who struggle, year by year.

With talks, with leaflets, open doors,
We push against old, closed-up shores.
We ask the question, long denied.
Who decides whose health to hide?

In crowded trains, in silent pain,
In laughter, in strength, through sun and rain,
They live, they dream, they stand so tall,
A part of us, a part of all.

This month we promise, fierce and true,
To stand with them, to see them through.

Rahul Karandikar