IIH Warriors India

30/07/2026

💙💚 The IIH Chronicles – Avijit’s Voice [swipe ↔️]

“Everything I read online said that IIH mainly affects women of childbearing age. As a man, I struggled to understand how I could have this condition,” shares Avijit Mitra, reflecting on his diagnosis journey, challenging misconceptions, and navigating .

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🌸 Through The IIH Christent headaches, vision changes, pulsatile tinnitus, nausea, or dizziness.
If you notice any of these, consult your nearest ophthalmologist or neurologist — early diagnosis truly matters.
(Check out our pinned post on the page to learn more about IIH.)

🔗 Follow us for more IIH insights, connect, share your experiences, and help us bridge the IIH divide:
linktr.ee/iihwarriorsindia 💙💚

30/06/2026

💙💚 The IIH Chronicles – Shreya’s Voice [swipe ↔️]

“I was advised to undergo shunt procedure to protect my vision from further damage…” shares Shreya from Hyderabad, reflecting on vision-threatening IIH, emergency intervention, and learning to embrace life with a shunt while navigating her .

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🌸 Through The IIH Chronicles, IIH Warriors India shares the voices of individuals living with IIH — a chronic, rare neurological condition often misunderstood as “just a headache” or “stress,” with an invisibly dynamic, disabling nature that affects daily life in unseen ways.

⚠️ Know the signs: persistent headaches, vision changes, pulsatile tinnitus, nausea, or dizziness.
If you notice any of these, consult your nearest ophthalmologist or neurologist — early diagnosis truly matters.
(Check out our pinned post on the page to learn more about IIH.)

🔗 Follow us for more IIH insights, connect, share your experiences, and help us bridge the IIH divide:
linktr.ee/iihwarriorsindia 💙💚

29/06/2026

"Some recognitions arrive quietly. Others unexpectedly open up conversations that were long overdue.

Last week, I was deeply honoured to receive the Rar (ORDI) Rare Star Award 2026 in the category "Never Quit – Role Model Living with Rare Disease (16–30 Years)", along with the NIDHI Cash Award.

When I first shared the news with my close ones, there was a moment of silence.

Perhaps because recognitions like these are still unfamiliar to many of us.

Over the next few days, though, that silence slowly turned into conversations.

The media coverage, messages, calls, comments, and heartfelt congratulations reminded me how much visibility matters. Every story shared became an opportunity to bring greater awareness to rare diseases.

What makes this recognition different is that it acknowledges the realities of living with a life-altering rare disease while continuing to learn, work, contribute, and navigate life.

Living with Idiopathic Intracranial Hypertension (IIH), which resulted in blindness, has taught me that rare diseases are rarely just about health. They intersect with disability, gender, education, profession, accessibility, relationships, culture, and countless everyday experiences.

What makes this award especially meaningful to me is that it recognised not only my lived experience, but also the work that has grown alongside it, across universal accessibility, inclusive design, research, policy, advocacy, public awareness, and community engagement through Poornamidam | पूर्णमिदम | పూర్ణమిదం, IIH Warriors India, and other professional collaborations.

Personally, this award feels both encouraging and humbling. While the work I pursue gives me immense satisfaction, it can also be mentally exhausting at times. Recognition like this provides a much-needed boost, reaffirming that the effort is making a difference and motivating me to continue with renewed energy and commitment.

I am thankful to the jury, Prasanna Shirol, the ORDI team, the rare disease community, healthcare professionals, caregivers, collaborators, friends, family, and everyone who celebrated this moment with me."

- Ar.Kavya Poornima Balajepalli
Founder & Curator, Poornamidam & IIH Warriors India

The Hans India
Visually-challenged Vizag architect bags ‘ORDI Rare Star Award 2026’ https://share.google/nbqLTwpxGRyN4cD3q

The Hindu
Visually challenged architect wins national-level Rare Star Award
https://www.thehindu.com/news/cities/Visakhapatnam/visually-challenged-architect-wins-national-level-rare-star-award/article71133679.ece

——

Image Descriptions (ALT Text):

1. Kavya smiles at the camera on stage while holding the ORDI Rare Star Award trophy, her certificate of appreciation, and the NIDHI Cash Award envelope, with the ORDI Rare Star Awards 2026 backdrop behind her.

2. Kavya receives the ORDI Rare Star Award from the guests of honour on stage during the award ceremony as they pose together for a photograph.

3. A large screen displays Kavya's name, award category, photograph, and highlights of her journey during the ORDI Rare Star Awards 2026 ceremony.

4. Kavya poses with ORDI co-founders Prasanna Shirol and Sangita Warde while holding an Idiopathic Intracranial Hypertension (IIH) awareness poster at the ORDI Rare Star Awards 2026 ceremony.

5. Close-up of Kavya speaking into a microphone while addressing the audience on stage during the ORDI Rare Star Awards 2026 ceremony.

6. Kavya stands beside the ORDI Rare Star Awards 2026 standee in the lobby of the Fairfield by Marriott Bengaluru Rajajinagar, smiling at the camera.

7, 8, 9, 10, 11, 12 are the snapshots of English and Telugu media coverages across Visakhapatnam and Srikakulam from Eenadu Digital , Sakshi, ABN Andhrajyothi Telugu News, The Hindu , The Hans India

26/05/2026

💙💚 The IIH Chronicles – Isha’s Voice [swipe ↔️]

“When these mysterious headaches refused to stop, I went to two doctors, who chalked it up to ‘normal stress’ and prescribed a course of painkillers,” shares Isha Sharma, reflecting on often overlooked pressure headaches, delayed recognition, and navigating everything that comes with .

↔️

🌸 Through The IIH Chronicles, IIH Warriors India shares the voices of individuals living with IIH — a chronic, rare neurological condition often misunderstood as “just a headache” or “stress,” with an invisibly dynamic, disabling nature that affects daily life in unseen ways.

⚠️ Know the signs: persistent headaches, vision changes, pulsatile tinnitus, nausea, or dizziness.
If you notice any of these, consult your nearest ophthalmologist or neurologist — early diagnosis truly matters.
(Check out our pinned post on the page to learn more about IIH.)

🔗 Follow us for more IIH insights, connect, share your experiences, and help us bridge the IIH divide:
linktr.ee/iihwarriorsindia 💙💚

[Invisible Disabilities Hidden Disabilities Chronic Illness]

30/04/2026

💙💚 The IIH Chronicles – Bhanu’s Voice [swipe ↔️]

"That day, IIH did break me" shares Bhanu from Hazaribagh, reflecting on her diagnosis journey and navigating her .

↔️

🌸 Through The IIH Chronicles, IIH Warriors India shares the voices of individuals living with IIH — a chronic, rare neurological condition often misunderstood as “just a headache” or “stress,” with an invisibly dynamic, disabling nature that affects daily life in unseen ways.

⚠️ Know the signs: persistent headaches, vision changes, pulsatile tinnitus, nausea, or dizziness.
If you notice any of these, consult your nearest ophthalmologist or neurologist — early diagnosis truly matters.
(Check out our pinned post on the page to learn more about IIH.)

🔗 Follow us for more IIH insights, connect, share your experiences, and help us bridge the IIH divide:
linktr.ee/iihwarriorsindia 💙💚

[Invisible Disabilities Hidden Disabilities Chronic Illness]

[Alt Text]

Square poster with dark teal background and subtle molecule pattern. IIH Warriors India logo top-left, QR code top-right. Title "The IIH Chronicles" at top center. Center features a quote from the story. Bottom-left: circular badge with Bhanu's photo surrounded by blue-green butterflies alongside her details.

Quote 1: "My journey with Idiopathic Intracranial Hypertension (IIH) began with something that felt both familiar and frightening recurrent, severe headaches. What followed was a long and exhausting phase of uncertainty, countless hospital visits, numerous medications, and no clear answers. Despite all the effort, nothing seemed to improve, and I was left feeling lost and helpless"

Quote 2: "Everything changed about three years ago, when I was finally diagnosed with IIH after a lumbar puncture at a hospital in Bangalore. I still remember lying on the bed when the doctors came in and gently told me that my test results confirmed the condition. They explained it calmly, but hearing about the possibility of vision loss for the first time was overwhelming. At that moment, I felt completely shattered."

Quote 3: "That day, IIH did break me. But over the past three years, my relationship with IIH has changed. What once felt like a burden has slowly become a turning point in how I see and treat myself. It has taught me to pause, to listen to my body, and to prioritise my well-being in ways I never did before."

Quote 4: "There have been many challenges in managing the pain, dealing with uncertainty, and navigating days when even simple tasks felt difficult. But there have also been quiet victories: learning to slow down without guilt, recognising my limits. Pausing and taking breaks no longer makes me feel guilty about myself anymore about my work."

Quote 5: "Today, I don't see myself as someone who is just managing IIH symptoms. Instead, I see myself as someone who is learning to care for herself more intentionally. IIH has pushed me to love myself more, to take better care of my body, and to truly value rest and healing."

Followed by the quote 5, the last poster has subtly integrated the lyric in Hindi with translation within the design:
“रुक जाना नहीं तू कहीं हार के
कांटों पे चल के मिलेंगे साये बहार के
ओ राही, ओ राही…”
“Do not stop, do not give up in defeat;
Even if you walk through thorns, you will find the shade of spring.
O traveler, keep going…”

30/03/2026

💙💚 The IIH Chronicles – Neha’s Voice [swipe ↔️]

“In just a matter of days, I had gone blind,” shares Neha T B from Raipur, reflecting on her diagnosis journey and navigating her .

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📖 Read the complete blogpost:
The IIH Chronicles – Neha’s Voice
https://medium.com/.india/the-iih-chronicles-nehas-voice-3607ceb4d217

🌸 Through The IIH Chronicles, IIH Warriors India shares the voices of individuals living with IIH — a chronic, rare neurological condition often misunderstood as “just a headache” or “stress,” with an invisibly dynamic, disabling nature that affects daily life in unseen ways.

⚠️ Know the signs: persistent headaches, vision changes, pulsatile tinnitus, nausea, or dizziness.

If you notice any of these, consult your nearest ophthalmologist or neurologist — early diagnosis truly matters‼️

(Check out our pinned post to learn more about IIH.)

🔗 Follow us for more IIH insights, connect, share your experiences, and help us bridge the IIH divide: linktr.ee/iihwarriorsindia 💙💚

[Alt Text]:

Template Description - Square poster with dark teal background and subtle molecule pattern. IIH Warriors India logo top-left, QR code top-right. Title “The IIH Chronicles” at the top center. Center features a quote from the story. Bottom-left: circular badge with Neha's photo surrounded by blue-green butterflies alongside her details.

Quote 1: "IIH is not just a medical diagnosis—it is a lived reality, a journey of resilience, and a testament to the human spirit’s ability to adapt and thrive against daunting odds."

Quote 2: "I am Dr. Neha Bhagwani, a researcher, and my journey with IIH began unexpectedly, marked by relentless headaches, vomiting, dizziness, and sudden disturbances in vision. At first, my symptoms were mistaken for a simple stomach infection. What followed were 15 excruciating days of confusion, uncertainty, and unmanageable pain before the correct diagnosis was finally made."

Quote 3: "By that time, the damage had already been devastating, an opening pressure of 46 cm H₂O had left me with nearly 99% vision loss. In just a matter of days, I had gone blind. Conventional medication could not control such elevated pressure, and I had to undergo TP/LP shunt surgery(spine).
Though intimidating, that surgical intervention became a pivotal moment in my life. It gave me back a portion of my sight—not complete, but just enough to hold on to hope. It reminded me that even in the deepest darkness, there can still be light."

Quote 4: "Yet, IIH is more than its physical manifestations. It carries with it a silent, emotional weight that is often overlooked—the constant adjustments in lifestyle, the strain on relationships, and the unspoken battles with anxiety, depression, and isolation. What has been particularly painful is society’s lack of understanding. To many, IIH is invisible, and this invisibility breeds further alienation."

Quote 5: "But I refused to let IIH define me. Despite vision loss and constant uncertainty, I chose to rise from despair, rebuild my identity, and continue forward.
Today, I am the founder of Dr. Neha’s Classes, an educational center where I dedicate myself to empowering students through knowledge. Each day, I seek to prove that resilience does not mean life without hardship—it means finding the courage to move forward in spite of it."

Quote 6: "IIH has transformed the way I perceive life. It has taught me that real strength lies not in what we lose, but in what we choose to reclaim. Through determination, courage, and an unwavering will, I have learned not to measure my life by limitations, but by my ability to rewrite them into purpose."
Song Lyrics next to the photo: “मैं अपनी ही दुनिया बनाऊंगी..
इक ज़िंदगी मेरी, सौ ख्वाहिशा..
मैं जीना, मैं जीना, मैं पूरी तरह
I will create a world of my own..
This one life of mine, a hundred dreams..
I will live—truly, fully.”

01/03/2026

28/02/2026

💙The IIH Chronicles – Rajshri's Voice💚[swipe ↔️]

"Going through excruciating pain is not something we can ever be prepared for. There are moments when I want to give up and just let go of everything," shares Rajshri B from Kolkata, reflecting on her diagnosis journey and managing her .

↔️ Swipe to read her journey through uncertainty, delayed answers, invisible symptoms, and the quiet resilience it takes to live with IIH every single day.

Read Complete Blogpost [The IIH Chronicles - Rajshri's Voice:
https://medium.com/.india/the-iih-chronicles-rajshris-voice-901894bbd242]

🌸 Through The IIH Chronicles, IIH Warriors India shares the voices of individuals living with IIH — a chronic, rare neurological condition often misunderstood as “just a headache” or “stress,” with an invisibly dynamic, disabling nature that affects daily life in unseen ways.

⚠️ Know the signs: persistent headaches, vision changes, pulsatile tinnitus, nausea, or dizziness.
If you notice any of these, consult your nearest ophthalmologist or neurologist — early diagnosis truly matters.
(Check out our pinned post on the page to learn more about IIH.)

🔗 Follow us for more IIH insights, connect, share your experiences, and help us bridge the IIH divide:
linktr.ee/iihwarriorsindia

InvisiblyDynamic LifeWithIIH InvisibleDisabilities

28/01/2026

💙 The IIH Chronicles – Dr. Punitha Kamath’s Voice 💚

“As a doctor, I approach my condition with both medical awareness and mindful balance,” shares Dr. Punitha Kamath, pediatric dentist from Bengaluru, reflecting on navigating her with strength, insight, and resilience.

🌸 Through The IIH Chronicles, IIH Warriors India amplifies the voices of individuals living with IIH — a chronic, rare neurological condition often misunderstood as “just a headache” or “stress,” with an invisibly dynamic, disabling nature that impacts daily life.

⚠️ Know the signs: persistent headaches, vision changes, pulsatile tinnitus, nausea, or dizziness.
Early diagnosis and the right guidance can make a lasting difference.

🔗 Follow us to learn, connect, and help bridge the IIH divide:
linktr.ee/iihwarriorsindia 💙💚