Read time 5 minutes
This blog is another opportunity to feel grateful and thank you dear Universe: You continue to bless me with recovery and overall health.
Even statistically there would be many doppelgangers out there with similar health situations looking for information to improve their understanding that could put them a step closer to more precise treatments.
The real strength in dealing with my crisis came from getting introduced to patients, families, caregivers, and doctors associated with similar disorders who helped me understand my illness and various treatment options better which resulted in better tailor-made choices that directly impacted my overall well-being, post getting diagnosed with a rare disease, Isaacs’ Syndrome (a neuromuscular condition stemming from muscle hyperactivity), and following that diagnosis, suffering from some chronic ailments like Lyme disease (a bacterial illness transmitted by ticks), Glaucoma (which damages the optic nerve), and Membranous Glomerulonephritis (a progressive kidney disease).
I realized how making a few important decisions was a piece of cake due to evidence-based information, advice, and input from some fellow mates who had faced similar health situations. In life, there are many moments when there is only one unambiguously correct answer for everyone even though there are several possibilities to evaluate. I’m fortunate to be growing up in a digital world that answers almost anything under the sun that the human mind can perceive. Having said that it was not at all easy as the diseases were complex in nature and therefore it was a huge fight to get customized information.
Re-winding on the pre-diagnosis period gives me goosebumps when there was so much confusion in the air for me and my family. The initial stages of pre- and post-diagnosis were layered with so many complexities that none of us in the family were prepared for what was coming next and we were quite frustrated, hopeless, and stressed in the wake of the situation. Those were days of isolation when we literally ran from one place to another to find whatever little information we could gather. The resources were very limited as no one in the family had ever dealt with something like this before. There were no reference points, helpful research documents, support groups, or patient interactions. To top it up, some doctors started in consternation after hearing about my scattered symptoms and were unequipped to spend insufficient time and give a clue of what was happening and the future course of action. Though they claimed to be some of the best in the industry however were extremely hesitant to acknowledge that none had answers to most of my questions and knew less about the diagnosis. Words won’t be enough to express how each passing day was adding so much of a ppsychological burden.
Today, as awareness among people is rising and so are a number of platforms that discuss rare health conditions. I tried Facebook: –
Facebook: acted like a student directory featuring facts and giving me access to support groups of similar communities. It is a supporting tool, bridging the knowledge gap and reducing anxiety. It gave me confidence when I met people with similar issues and their way of dealing with them. Having access to this tool was like being in a shared decision-making collaborative environment where every member had a common goal to help each other at their best capacity.
Isaac’s Syndrome, Neuromyotonia, Cramp Fasciculation Syndrome, Peripheral N: – A community with Isaacs’ Syndrome’s patients, families, friends, doctors, and caregivers. The platform is dedicated to experiences and topics of similar interest. The page connected me to people sitting miles away in other countries with different social backgrounds however with one thing in common, everyone had intentions to help, provide information and share their personal experiences.
Advocacy groups: – I asked many questions knowing that there would undoubtedly be someone who would share their perspective and that the information would benefit me. There were various instances when the community members shared inspiring ideas that lead to helping me solve bigger problems. It encourages patient participation in relation to understanding, accepting, and administrating the disease stronger.
In my experience gathering, the right information from trustworthy sources gave me the strength to fight out my situation better as for patients with rare diseases, the situation is even more trying.
Today after spending almost 8 years with my diagnosis, and facing various stressful moments, I presume to be getting better at managing stress, becoming more resilient, and confronting future challenges. And therefore, I thought of taking the initiative of filling the information gap through ordinarilyrare.com. A large population means even rare diseases are not statistically improbable, but information about them is still hard to access. This gap leaves many anxious about the impact of rare diseases on their lives and those of their loved ones. The idea of coming up with this platform was to become solution-oriented and address questions that were once a big challenge for me and my family. Questions like: Does my suffering from a rare disease, mean that I am the only person fighting it? Is there a cure? Can my symptoms be managed with a holistic healing approach, or would I always be on medicines? Etc.
I wanted to address these and other questions which came up in my journey through ordinarilyrare.com. The platform is my way of sharing relevant information simply and directly:
- By sharing my story, I am hoping to reach out to others who may have gone through similar actual experiences and compile this knowledge to the benefit of yet others.
- Coming across real experiences of fellow patients could provide valuable insights not usually found in academic books or articles
- Experiencing symptoms is one thing however getting to know ways to efficiently tackle them is the key
- Learning what worked for others facing identical situations from their successes and failures is always perceptive.
- Emotional support always helps to cope better and ensures that they are not alone.
The views expressed above in this article are the author’s own and do not represent any kind of medical advice.