Archives - Ordinarily Rare

2023

A RARE DISEASE, IN MY EXPERIENCE

Stories are alive, especially those that were lived in mankind’s timeline. The story of Rachit Shah and his experience with the very rare Isaac Syndrome is transformational and inspirational.

2022

THE MAGNETIC EFFECTS OF
ALTERNATIVE – THERAPIES

The oppressive nature of allopathic treatment made me turn to several alternative therapies, including Ayurveda, Naturopathy, Homeopathy, and Magnetic Acupressure. I found that every step towards relief matters.

THE PETITION DRIVE

As part of my efforts to spread awareness about rare diseases, I started a Change.org petition which also requested empowered authorities to help the community of people suffering such diseases. This petition received a boost from IIT BHU.

RARE IS STRONG

My collaboration with IIT BHU on the #RARE_IS_STRONG campaign also built awareness of India’s national policy on rare diseases. In this discussion, I analyzed the significant provisions of the policy its effectiveness, and its shortcomings.

2021

TIPS THAT CAN HELP KEEP THE HOPE
ALIVE IN HARD TIMES

Living with a rare health condition can take a toll on mental health too, however, some tricks helped me cope.

THE AROMA OF MY FAVOURITE DISH
REMINDS ME OF ?

Getting treated for Isaacs’ Syndrome brought about drastic changes in my diet. In the process, learned to respect every bite of food I ate.

NOW I KNOW WHY CAGED BIRDS SING

I have tried to convey my journey of the past several years in my writings, the latest of which is a song of acceptance and acknowledgment, but also fear and longing.

THE ART OF ACCEPTANCE

In coming to terms with my rare health condition, I learnt the importance of keeping my emotions balanced, and the difference acceptance can make to life.

2020

IMPORTANCE OF LAUGHTER THERAPY

Laughter therapy is one of the many alternative therapies I tried to overcome my rare health condition. My experience with it taught me that it is easier to succeed with a smile than fall flat.

AN ENCOUNTER WITH TIME

The treatment I was undergoing for my rare health condition at times made me feel like I was crawling on broken glass. I focused on searching for a more enduring approach to healing.

THE PANDEMIC ROAD TRAVELLED LED
TO AN UNUSUAL HIGHWAY

In June 2020, I travelled by road from Tamil Nadu to UP with someone who did not share a single language with me. The challenging journey brought me home laden with new learnings, such as the fact that interpretation often matters more than understanding.

2019

YOUR IDEA OF FUN WILL CHANGE

My search for alternative, drug-free therapies led me to take up table tennis again, as sports therapy. In the process, I re-educated myself about my health condition.

LIVING WITH A RARE DISEASE

While battling the health condition, my career took a hit and I also had to face indignity when I tried to revive my career and wondered how companies and offices can become more welcoming for people suffering from rare diseases.

2018

LIVING WITH ISSAC

What does it mean to be diagnosed with Isaacs’ Syndrome? What kind of treatment do you seek? What challenges does it throw into your family life? This article about my experience with Isaacs offers some answers.

2023

A RARE DISEASE, IN MY EXPERIENCE

Stories are alive, especially those that were lived in mankind’s timeline. The story of Rachit Shah and his experience with the very rare Isaac Syndrome is transformational and inspirational.

RARE DISEASES OF INDIA - A NEGLECTED FIELD?

Rare diseases are considered rare, as it afflicts a small number of people in any population; according to the WHO it is less than one per thousand. Therefore, it hardly gets enough attention from governments or from the people in the medical world.

2022

THE MAGNETIC EFFECTS OF
ALTERNATIVE – THERAPIES

The oppressive nature of allopathic treatment made me turn to several alternative therapies, including Ayurveda, Naturopathy, Homeopathy, and Magnetic Acupressure. I found that every step towards relief matters.

RARE IS STRONG

My collaboration with IIT BHU on the #RARE_IS_STRONG campaign also built awareness of India’s national policy on rare diseases. In this discussion, I analyzed the significant provisions of the policy its effectiveness, and its shortcomings.

THE PETITION DRIVE

As part of my efforts to spread awareness about rare diseases, I started a Change.org petition which also requested empowered authorities to help the community of people suffering such diseases. This petition received a boost from IIT BHU.

2021

TIPS THAT CAN HELP KEEP THE HOPE ALIVE IN HARD TIMES

Living with a rare health condition can take a toll on mental health too, however, some tricks helped me cope.

THE AROMA OF MY FAVOURITE DISH REMINDS ME OF ?

Getting treated for Isaacs’ Syndrome brought about drastic changes in my diet. In the process, learned to respect every bite of food I ate.

THE ART OF ACCEPTANCE

In coming to terms with my rare health condition, I learnt the importance of keeping my emotions balanced, and the difference acceptance can make to life.

NOW I KNOW WHY CAGED BIRDS SING

I have tried to convey my journey of the past several years in my writings, the latest of which is a song of acceptance and acknowledgment, but also fear and longing.

2020

IMPORTANCE OF LAUGHTER THERAPY

Laughter therapy is one of the many alternative therapies I tried to overcome my rare health condition. My experience with it taught me that it is easier to succeed with a smile than fall flat.

AN ENCOUNTER WITH TIME

The treatment I was undergoing for my rare health condition at times made me feel like I was crawling on broken glass. I focused on searching for a more enduring approach to healing.

THE PANDEMIC ROAD TRAVELLED LED TO AN UNUSUAL HIGHWAY

In June 2020, I travelled by road from Tamil Nadu to UP with someone who did not share a single language with me. The challenging journey brought me home laden with new learnings, such as the fact that interpretation often matters more than understanding.

2019

YOUR IDEA OF FUN WILL CHANGE

My search for alternative, drug-free therapies led me to take up table tennis again, as sports therapy. In the process, I re-educated myself about my health condition.

LIVING WITH A RARE DISEASE

While battling the health condition, my career took a hit and I also had to face indignity when I tried to revive my career and wondered how companies and offices can become more welcoming for people suffering from rare diseases.

2018

LIVING WITH ISSAC

What does it mean to be diagnosed with Isaacs’ Syndrome? What kind of treatment do you seek? What challenges does it throw into your family life? This article about my experience with Isaacs offers some answers.