Importance of Research to a Rare Disease

Read time 6 minutes

This blog is another opportunity to feel grateful. Thank you, dear Universe, you continue to bless me with recovery and health.

My research about my rare and chronic diseases began when I was left with a list of unanswered questions!!

The purpose of gathering information and knowledge goes beyond textbooks. The idea is to shape our lives, achieve goals, and finally meet success.

Any care, medicines, and treatments we receive, all start with research. None of it is possible without adequate research.

I was diagnosed with a rare disease called Isaacs’ Syndrome. Isaacs’ is a neuromuscular health condition that stems from muscle hyperactivity. My lift post-diagnosis underwent a drastic change. In the process, I also discovered that I had Lyme disease. Lyme is a bacterial illness that gets transmitted through ticks. I was also accompanied by Glaucoma. Glaucoma is an eye-related disease that damages the optic nerves. And Membranous Glomerulonephritis is a progressive kidney disease.

And my first after the diagnosis was why my doctor calls me a Warrior.

What makes Isaacs’ Syndrome rare? Is there limited information about it? Is the treatment difficult with no permanent cure? How does it impact my life? What is the must-know about the disease?

The result was a list of many unanswered questions.

It became very crucial for me to have answers and information to deal with it all.

Apart from various discussions with my team of doctors, it was important to do my set of research. Gaining knowledge about myself contributed to better understanding and improving my health conditions. Also, in many places, it acted as a support system in preventing and managing my illness.

In my experience, Isaacs’ Syndrome is not something that can be managed alone. The way the extrinsic stimulus unfolded evoked a shocking biological response for me. Dealing with stabbing pain, twitches, and alien symptoms throughout the body isn’t easy. I was confined to bed with props like pillows and heating pads to support my legs and back. I was prescribed medicines including painkillers, immunosuppressants, steroids, and sleeping pills.

The situation made me vulnerable to creating further complications to my neurological condition. I felt physically, morally, and emotionally fatigued.

Steps I took to conduct my research:

Many a time we pop open Google to search for the problem. The results are scary. After looking over you think you may have some incurable disease. But in reality, it’s a flu virus.

Trusting a blog by a random person who has no association with the subject can be fatal.

Though Google is a great source of information. However, for sensitive issues like health, it is crucial to be very careful. The information we consume decides our course of action and recovery.

Though I struggled with various health constraints, but I carefully picked up information. I went slow with the following steps to conduct my research:

I searched for evidence-based literature by taking the help of various international sites. It became easy to find solutions.

To begin with, I defined the objectives of my research study:

My clear goal was to write informative blogs about my personal experiences. I aimed to be concise and express myself in a way that made sense to my readers. The idea outlines what I intend to achieve through these blogs.

The objectives guided my focus and kept me on track.

Analyze and interpret data:

I did analyze the relevance of a topic and the information provided before it went on air. The chosen topics are based on the identified trends and my personal experiences.

I created a questionnaire:

The list of questions was my base for these blogs.

I had many queries that went unanswered during my journey. Through these blogs, I have tried answering them with my experiences and knowledge. It clears the purpose of exposing information about my rare and chronic ailments.

Potential benefits to readers:

I made sure that the published blogs should have relevant information arising from my personal experiences. It provides potential benefits to readers.

I have tried following best practices while communicating my findings.

At all stages of my disease, I discovered that research had a great role to play. Words of Research do matter while dealing with rare & chronic health conditions: –

Researching rare is important to make them common:

India is a country with a vast population of 1.51 billion. Research will always be the key to a changing society and a tool used for growth.

Examining the basis of why a gene is not functioning properly in a disease can be very helpful. It can reveal and help find more about the gene’s normal functionalities. To know more about our roots and our functionalities, we must delve deeper into any subject.

Many chronic and rare ailments have been studied less than the common ones. Research is necessary and not a luxury.

Generates new ideas and develops newer treatments and cures:

Generally, when knowledge is curated and rightly used, it changes the game.

Under proper guidance, I could use scientific methods to my benefit. Evaluating them helped me solve bigger and more specific problems.

It was interesting to work on something novel. I was solution-specific and combined various treatments to my benefit.

Increases public awareness:

Public awareness is mobilizing the masses into taking action. These actions depend a lot on empowering them with health literacy.

Ordinarily rare and these blog posts aim to do the same.

An attempt to spread the word of knowledge in rare and chronic health conditions:  

Ordinarily Rare is my initiative to spread awareness of rare and chronic health conditions. It is a diary of six long years of my battle, various experiences, the aftermath of my diagnosis, various takeaways, and much more.

Rewinding the pre-diagnosis moments gave me goosebumps when the confusion, fear, and uncertainty in the family were at their peak. Those were days of isolation when we literally ran from one place to another to find whatever little information, we could get our hands on. This gap of not having access to the proper information left us very anxious. I decided to start writing my experiences and share them with others to spread awareness through the platform of Ordinarily Rare.

It’s time we prioritize and research more seriously to fast-track our problem-solving capability. Though times are changing and some diseases are not considered exotic now, a lot is still unfinished. We are entering a time when the number of rare and chronic disease cases is increasing daily. Undoubtedly, efforts are being made worldwide to pool information and make it easy to access with the help of artificial intelligence, but these need to bear fruit soon. We need a promise that could make life better by making tough moments bearable and look forward to a better tomorrow not only for ourselves but for generations to come.

In my experience, although years have passed since my diagnosis however the burden of having a rare disease is as yet hardly understood.

It’s a global concern when millions wait for their unmet queries to be addressed. We could find our answers once the unknown is known by dwelling deeper into research.

Doing research is stimulating and fulfilling work.


By taking the previous steps, you can ensure that your research is accurate and comprehensive and can be communicated thoroughly to all stakeholders. This will give you the confidence to present your findings in a meaningful way and disseminate them to the appropriate audiences.

Subscribe to our blog

Subscribe to our blog

You cannot copy content of this page