I’ve been writing a lot recently about rare and orphan diseases, especially those that are associated with dementia (which is NOT synonymous with Alzheimer’s disease). Dementia is (obviously) a huge untreatable condition with a huge impact on the healthcare system, both for those with dementia and their caregivers, and those who provide and fund care.

I looked at YouTube today to see how much video information was on the Internet about conditions — Corticobasal Dementia CBD; Frontotemporal Dementia/Degeneration FTD; Progressive Supranuclear Palsy PSP. These are very rare diseases both in the USA and world wide. There are no treatments for any of these conditions although pharmaceuticals are sometimes used off-label to attempt to control symptoms and various behavioral assistance (physical therapy, occupational therapy, speech therapy, case management, support groups, caregiver education and supports) is often offered to improve the quality of life of patients and caregivers.

Most physicians in non-neurological specialties have not studied these conditions nor know much about them.

For the three conditions I examined there were dozens if not hundreds of videos of clinical symposia, caregiver observations, patient interviews and observations, and timelines of the disease progression of individuals and especially a few celebrities.

Especially with rare diseases, where there is not a lot of information in the media for the public to consult, videos on YouTube can make a great contribution to patient-caregiver-professional education and an improvement through education of the quality of life for patients and their caregivers.

What is NOT on YouTube?

I see no assessments of the quality (validity, reliability, applicability) of the videos.

Why not have some professionals look at the videos, and rate them for accuracy. Really. And then create a video.

There is some awesome information currently on YouTube about rare and orphan diseases. There are also huge holes in the aggregate collection of videos in that many important topics are not discussed. And some of the videos are just plain not reflective of current medical standards or state-of-the-art knowledge.

I’d urge professional groups and #YouTube to look at getting a rating system for these videos of all diseases-conditions, and especially the rare and orphan diseases. There are huge benefits of this information but also some errors that need to be fixed so that patients and caregivers in search of a cure where there is none available at this time are not misled.

#YouTube is a huge resource to individuals and their caregivers who must deal with rare and orphan diseases without effective treatments. Hopefully, the videos will be used to educate and support, but incorrect information may unrealistically raise the hopes of patients and caregivers that these diseases can be treated with unapproved medical treatment or ineffective alternative approaches. Or, videos of late stage sufferers from a disease can be extremely scary to patients and caregivers and not permit them to focus on maximizing the quality of the left before the late stages of a disease.

Let’s get some professional video comments from established experts who CAN talk to REAL folks in a way they can understand up on YouTube. Great information should be widely disseminated; incorrect or damaging information should not be allowed to be presented under “freedom of speech” laws without professional comment about probable inaccuracies.

Correct and supportive and understandable videos would go a long way to help patients for whom there are not established and efficacious treatments have the best possible quality of life.

Now that would be a huge contribution. Heck, I’d even give Google a tax deduction (and you will never hear me mention such a suggestion in any other context) for getting accurate and REVIEWED video content on rare and orphan diseases available to all in a number of different languages.

Click on the images to expand.