Hi guys,

Just wanted to share my thoughts about medicines and risks.

A few days ago my mom was confined in the hospital due to a rare disease called Steven Johnson Syndromd (SJS) , "a rare, serious disorder of the skin and mucous membranes. It's usually a reaction to a medication or an infection. Often, it begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters." (Wikipedia)

The story is that a month ago my mum was told by a doctor to take alluprinol, a meditation for uric acid. Yes, my mum was asked if she had allergic reactions to any medicine, unfortunately my mum doesn't really know because nothing like that ever happens to her (except for now which is the first time). She took alluprinol for a month and now, she's suffering SJS at the hospital.

Im not knowledgeable enough about risks, but I guess this just makes me reflect about risk communication.

Is it the doctor's fault? Perhaps not, because he asked my mum about certain allergic reactions and basing on my mum's response (which is no allergic reaction to medicine's) the doctor just assumed that it would be okay to take the medicine.

Is it the medicine's fault? Perhaps not, because the probability of getting the disease is low, and when you think about it this way, it's probably reassuring...until your loved one is part of the "low probability" of getting the disease then it's probably a different situation. The doctor also didn't tell my mum about certain side effects like this, and even if he did, SJS wouldnt really be part of what he'll say, but I am just assuming things so I am not sure.

Do I hate science now? No.
Do I distrust medicines and doctor prescriptions now? No.

..but would my answers be different if I myself was the one suffering from the disease right now?

Just makes me realise that the most important thing is sceptiscm - being well informed with the risks and accepting that science may or may succeed in curing you.. And that's just how it is really.

The problem perhaps (in the context of my country) is that science needs to either be wrong or correct; it can't be half and half. If you say something wrong about a certain medication, the attitude of people would be straightaway negative already, so if you say the the medication works, the assumption is that nothing will ever go wrong. Most of the time doctors also don't bother explaining all the details of a medicine, and patients would just trust doctor decisions as it is.

However, I understand this kind of attitude towards medicines. Afterall, you are dealing with life and death, so it's normal for people to feel bad when things like this happen. Kinda makes me think about anti-vaxxers and their experiences (while some of these people are just plain naive, some actually experienced something to suddenly decide not to take vaccines anymore.. Anyway this is something I don't wish to cover anymore)

If there's something that needs to change, in my opinion I think it should be the way we communicate risks to people, and how people perceive medicines. Science is not perfect, and everyone's just trying to play their cards right. Truly everything in life is just about taking risks, even if a "1% probability" is low, it's still there, and it's important that people know about this and evaluate the situation carefully.

Anyway, these are just my thoughts while at the ER. I would appreciate your thoughts about what I said, any articles that I can read that isn't bias, please do share! I am all for science but I am also all for people. I understand factors like emotions and personal values. Im sure you all can tell that I am a bit dissapointed with what happened, but as a science communicator I try my best to look at both sides. I just wish my mum would still take medications if deemed necessary and just assess the situation, instead of becoming doubtful about these for all her life..

Please do whisper prayers for the safety of my mum :-)