People Coping With Rare Disease Are Internet Power Users | Hacker News Reader

People Coping With Rare Disease Are Internet Power Users

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19 pointsshawndumas9 comments

I used to work for a boss who had Lyme disease (I didn't know until he told me). He was amazed at how much traffic he got to his free page that he had just setup to discuss and cope with the condition.

Misinformation is a problem but the rarity of the disease would likely increase the people-bond and make a tight-knit group.

The size would, in effect, prevent spam/scam/disinformation issue in other larger groups as it would be too difficult to be worth the effort (unless your name is Tyler Durden, I suppose).

I wrote a blog post about the passing of a schoolmate with sino-nasal undifferentiated carcinoma (very rare), who had cultured his own cell line and his advisor then rescued those cells from the Katrina floodwaters. Every six months or so I would get another comment from someone looking for someone else with the disease. Unfortunately, I deleted the blog. I hadn't even thought about that until now.

As someone who is extremely cautious about any medical information found on the Internet, I would wonder whether that cautiousness is heightened or lessened when talking about rare diseases. How do these power users know who to trust?

As someone with a less rare disease, I can say a bigger danger is getting a very negative picture about your condition. The people that are very active in these communities are often the ones that are dealing with the disease more often due to severity (i.e. those that are dealing with the disease fine are often not seeking out these communities). This creates a selection bias that can give you a very negative picture of your prospects that doesn't correlate well with reality.

I'm not saying that these communities are bad. You just have to take everything into consideration when dealing with them.

I completely agree with you. Having a positive outlook is essential to coping with any disease. I find myself felling more depressed when I really focus on my disease. I understand the need to relate with other people with a similar condition. However, it is important not to let other people's experiences directly affect your state of mind.

I'm going to guess "hightened". My mother was recently diagnosed with a myeloproliferative neoplasm, and has been reading & connecting online with great vigor since. I can't speak for her, of course, as to how she knows who to trust, but my sense is that it's not quite like googling for diabetes or toenail fungus and getting homeopathy links in the results. Rather, it's more like exchanging emails with other patients with the same disease, and reading documents offered by the Mayo Clinic etc. No doubt she still needs to exercise critical thinking, and not everybody is equally equipped for that.

As someone who suffers from a rare disease I have to be skeptical about whose information I trust. I tend to rely more on scientific papers and resources like PubMed. Many times you hit a paywall but with some good searching techniques you can usually find the full articles/publications for free.

As for my disease there is some very good scientific information out there and I have even found that there is an experimental procedure using stem cells (hematopoietic cell transfer) that could potentially cure me. The main problem is that there is a lot of misinformation on the Internet about stem cell transplants. There are a lot of places that are taking advantage of "medical tourism" revolving around stem cell transplants. These places are giving patients false hopes by providing a version of stem cell transplant that is IMHO not effective. You need to make sure to validate your findings and stick to respectable scientific sources. If someone is saying they have an amazing cure it is most likely snake oil.

One big problem with the rare diseases is that there may not be any science on a given subject. By that I mean not merely that nobody may have studied it, but that papers are quite narrow, so there may only be published research on two or three possible therapies out of several that may be promising. Yet you must make decisions relevant to your disease and life in general; maybe diet changes, maybe exercise changes, etc. If you can't have science, anecdotal evidence and personal conversations may be all you have. I would be cautious and skeptical, but on the other hand, you may have nothing else to turn to.

I love science, but no one can avoid having to function beyond the light it casts, the moreso for those with rare diseases.

I've got Celiac; whether it meets the fewer-than-200,000-in-the-US criterion depends on who you ask, but it's certainly less well covered by science than I'd like. Yes, there's a relatively easy treatment for me: Don't eat gluten. But I also am having children, and the science on what's best to do for them is very unsettled. There's hints of the importance of breast feeding, but, suppose my kid has all the genes and is breast fed and ends up with the condition masked by it, but still present. Is that possible? Is it better or worse than the obvious manifestation I experienced? Should I just cut them off from gluten entirely preventatively, or might that make it much worse if they ever accidentally get some anyhow, which is inevitable? Nobody knows, the available science only provides somewhat contradictory hints, yet my wife and I have to decide something.

That's true. I have run into the same thing. At times I get a little frustrated by all the research going on for other diseases. For example cancer is a multi billion dollar business. Where I go for treatments I almost feel like a second class patient. The cancer patients have access to all of these programs and support. Those of us with the rare diseases are often overlooked.

Still we need to realize that advances in these other diseases can still our diseases. For example, advances in stem cell therapies for other autoimmune diseases could help people like you who suffer from celiac disease. I have found that even when there is no specific information about your disease it is still possible to connect many of the dots. In my case it helps to have a wife who has multiple degrees in chemistry and biology. Combine that with my technical ability and we are a serious researching team. At times it is hard to sift through all of the information. The one thing I have really learned is that you have to take control of your disease. Sadly our doctors are not going to look out for us. It is our job to make sure we get the care we need and deserve.

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