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

29/10/2024

Here's a breakdown of the shared connections between stroke and epilepsy, as well as their relevance in awareness and treatment campaigns:

1. Stroke as a Cause of Epilepsy: Stroke is one of the leading causes of epilepsy in adults, especially older adults. Stroke-induced brain damage can lead to post-stroke epilepsy, where scar tissue or disrupted brain function from the stroke results in seizures. Understanding and managing stroke effectively can potentially lower the risk of developing post-stroke epilepsy.

2. Shared Risk Factors: Both conditions are linked to similar health risks, such as high blood pressure, heart disease, and diabetes. Lifestyle choices like smoking and excessive alcohol use can also increase the risk of both conditions. Focusing on these factors can help reduce the chances of developing either stroke or epilepsy.

3. Awareness and Support Challenges: Both stroke and epilepsy require awareness and prompt intervention. Campaigns like World Stroke Day (October 29) and National Epilepsy Day (November 17 in India) raise public awareness about recognizing symptoms and the importance of timely medical support, aiming to reduce stigma and encourage people to seek necessary care.

4. Symptom Overlap: Stroke and seizure symptoms can sometimes appear similar. For instance, complex focal seizures and certain types of strokes can lead to speech difficulties, weakness on one side of the body, and motor control issues. This similarity can make it challenging for people to distinguish between the two conditions without proper medical evaluation.

For more details, you can visit the and . These platforms provide in-depth information on managing stroke, epilepsy, and related neurological health initiatives.

*Disclaimer* This is a general Google searched information please don't reach any kind of conclusion before consulting/asking this to your neurologist.

30/09/2024

*"A Journey of Hope: Epilepsy in India"*

In India’s vast and varied land,
Epilepsy touches many a hand.
With millions facing its silent call,
It’s a challenge that affects us all.

A treatment gap that's wide and deep,
Where many fall, but few can leap.
Awareness lacking, care out of reach,
Stigma makes it hard to teach.

In villages where beliefs run high,
People look to the earth and sky.
Superstition clouds the way,
While proper care is kept at bay.

For families poor, the burden’s steep,
Jobs are lost, and worries keep.
Marriage hopes sometimes dim,
As myths still fill life’s brim.

Yet voices rise, both strong and true,
With NGOs spreading knowledge new.
Awareness grows, hope starts to shine,
In this long but needed climb.

Surgeons work with skill and care,
Offering treatment, rare and fair.
Affordable drugs help light the way,
But rural hearts still wait for the day.

In India, challenges blend with grace,
As hope and progress find their place.
Together, we’ll change the course,
And fight this battle at its source.

Rahul Karandikar. Epilepsy warrior.