Complex diseases and our failure to recognise them in time
Everybody has their own story. Mine started with the premature death of my beloved grandma. She died on the morning of my 21st birthday. Of cancer. Without a proper diagnosis.
This pushed me to become who I am, and shaped my future; the life I am living nowadays is because of my grandma.
I tried to learn everything about how cancer becomes. What is that thing some (or probably most) of us carry within us that turns against us at a certain point? What triggers that pathological change that brings the problem, disease and ultimately death to us?
I spent 15 years trying to figure out answers to my questions. I studied cancer, and other complex diseases from different angles-how they start, progress, and how can we try stopping, or better say delaying them.
As a researcher, I got so hooked on the specific thing I studied at the time, let’s call it the “molecule of the year”, and what does that molecule do, how it interacts with the other molecules. Somewhere in the process I forgot to think how does the big picture change with the change that molecule brings to us.
Two years ago I was forcefully awakened and realised how fragile the research is. While we as researchers might work hard and push out thousands of papers, good papers — people will still die, be misdiagnosed or receive too late diagnosis, just like my friend did. Currently, with our collective mindset — it is the inevitability of life.
My friend barely started enjoying her 30s when she got her terminal cancer diagnosis. She is not anymore with us, but she is a significant part of me and what I am doing.
At that point I switched from molecular only thinking to a more of systems and “frontend” thinking; and while reading through piles of published scientific stuff I realised that missed diagnosis happens way too often.
How is this possible? We are talking about personalised and precision medicine for years now. What about personalised diagnostics? What about precision diagnostics? Are those only the words?
[While researchers glorify themselves for curing (which is great, and not trying to diminish their big accomplishment here), they should focus even more on preventing, because despite a massive progress on the treatment front, too late or missed diagnosis still pose a major threat to our health!]
In short, missed diagnosis happens because you as an individual belong to a wrong group: age, sex and ethnicity, to name a few. It happened in almost all of the cases of complex diseases I encountered in my personal life.
People will feel consequences of cancer, or other complex diseases invading their bodies differently.
While you might have distorted vision, sugar cravings and increased night sweats, the person close to you might feel completely different.
And those different experiences will sometimes be stronger than the common denominator of a given disease.
This sporadic nature of symptoms, and the apparent disconnectedness will make you unsure when to take your symptoms seriously, and when to act on them. Trust yourself and the fact that you probably know your body the best, you spend all the time with it and in it. That is far more than 5-10 minutes that busy healthcare practitioner gets once or twice a year.
Consequences of not taking your symptoms seriously
A large number of complex diseases (approximately 1 in 4 cancers of different origins) get diagnosed at an emergency stage, or go unnoticed (like in 2% — 30% of people with type 2 diabetes).
This emergency-stage diagnostics will have multiple implications on your health:
1. The disease has spread and affected more than one organ, and by this has weakened the body, preventing you from successfully fighting it. It also leads to additional health-related complications.
2. Treatment options are narrowed, or in the worst case not possible anymore, because you need to be relatively healthy (minus the complex disease that has hit you) in order for medical staff to approve and be able to start the treatment. This is especially true for the new treatments and clinical studies. You need to be “healthy” to participate in those!
3. You need to treat and heal more than what started as a one-point disease.
4. Society gets burdened with tremendous costs for your sickcare (in terms of $$, but equally important — all the hours your loved ones will take in order to take care of you)
5. Heartache. Massive and hard. Doesn’t get worse than that.
This huge amount of money and effort can be spent on exploring the ways of how to improve early disease detection in all of us.
Large majority of complex diseases would be treatable or at least manageable through long-term, if detected early.
Why do complex diseases fail to be diagnosed? I will write about that in my next post.
