SupportGroups.com is for individuals, friends and families who want to connect during life's challenging times. Share experiences get a helping hand in a confidential, supportive environment.
Sponsored Links
Diagnosing an illness with Facebook
“How Facebook Saved My Son’s Life” -it’s hard to think of a more dramatic headline than that one from Slate. Last week a mother posted an article about her experience. In brief, her son got sick, son’s doctor suspected strep, son got worse, mom posted a photo of her son on Facebook, three dozen people commented on it, and one –a film actress and former neighbor– called to say,
“I hope you’ll excuse me for butting in,” she said, “But you have to get to the hospital. Now.” Her son Max had had the exact same symptoms, and was hospitalized for Kawasaki disease, a rare and sometimes fatal auto-immune disorder that attacks the coronary arteries surrounding the heart. “The longer you wait,” she said, “the worse the damage.”
Other comments by doctor friends and relatives persuaded mom to zip son to the hospital. Eventually Kawaski disease was diagnosed and son began treatment. Son is doing better now, but still recovering and may not get back to 100 percent. Mom has become a big fan of Facebook based on this episode and subsequent success using the service as a support network.
This is a nice story with a fairly happy ending but it makes me nervous to think this is somehow what a parent needs to do to keep their kid safe. What about all those Facebook users out there who don’t have the kinds of networks that this mom did? (It reminded me when I went on a tour of FBI headquarters in the 1970s. The tour guide showed us pictures of the 10 most wanted and said tour group members had identified several suspects over the years. My father told me that if this was the best tool the FBI had to find fugitives we were in worse shape than he thought.)
I asked SimulConsult CEO and pediatric neurologist Michael Segal MD PhD for his opinion about this phenomenon.
It is hit-or-miss doing social network diagnosis with laypeople, but of course this story is a triumph of signal over noise. Social network diagnosis works really well, though, with doctors involved, whose experience is orders of magnitude larger than that of non-clinician parents. This is the sort of things doctors do on rounds, what we do on doctor listservs, and the sort of thing we make computable in SimulConsult (we don’t currently cover this group of diseases but are gearing up to do so).
As a pediatric resident I remember Kawasaki disease being one of those diseases that was stressed as one that could get much worse if not dealt with promptly. However, if a disease is rare and the message is not reinforced often, one can forget the details. For this reason it is crucial to build in systems that remember the details.
The prior probability for suspecting strep goes a long way to explain how the doctors got sidetracked, but playing the odds and focusing on the horse instead of the zebra often works. SimulConsult has a blended approach that tries to get the best of both these approaches. It looks harder for disease in which intervention makes a huge difference, so even if such a disease is not ranked as #1, SimulConsult might focus suggested workup more on this disease than on diseases for which rapid intervention is not so important.
I’m hopeful stories like these will hasten physician use of systematic, computerized approaches to speed up correct diagnosis of rare disorders.
Sponsored Links
Support Groups
This information is solely for informational and educational purposes only. The publication of this information does not constitute the practice of medicine, family planning, child psychology, marriage counseling and this information does not replace the advice of your physician or other health care or mental health care provider. Neither the owners or employees of NaturalFamilyOnline.com or the author(s) of site content take responsibility for any possible consequences from any treatment, procedure, exercise, dietary modification, application of medication or any other action involving the care of yourself or any family members which results from reading this site. It is always best to speak with your primary health care provider before engaging in any form of self treatment. Additional information contained in our Legal Statement
Sponsored Links
Online Support Groups
SupportGroups.com provides a support network for those facing life's challenges. Click on the following links to get a helping hand in a confidential, caring environment.
Selected Support Groups
- Eating Disorder
- Fibromyalgia
- Grief
- Infertility
- Lung Cancer
- Pregnancy
- Menopause
- OCD
- Prostate Cancer
- Suicide
- Weight Loss
Related News
Latest Questions
- Latest Post by jrn Thu, 07/14/2011
- Submitted by nicholas Thu, 05/19/2011
- Latest Post by jrn Tue, 03/22/2011
- Submitted by jhp324 Thu, 12/02/2010
- Latest Post by adrienne_802 Tue, 08/10/2010
All Questions and Answers
Home Remedies
Here is a list of different home remedies pages that might be useful to you and your family.
- Heartburn
- Cold Sores
- High Blood Pressure
- Insomnia
- Arthritis
- Dandruff
- Depression
- Sore Throat
- Toothache
- Yeast infection
- Headache