"My Health Story" Video Project

Visit http://MyHealthStory.me for more info. The basic idea is to share short video stories about your healthcare experiences as a patient, family member, or healthcare professional. This is done by uploading these into your own YouTube account and adding a little tag that makes the system find the videos.

The project is hosted by a team at Radboud University Nijmegen Medical Centre.

Here is a good example by ePatient Dave:



The project leader Lucien Engelen provides some background info:



Please have in mind that by recording your video story you voluntarily reveal elements of your (or your relative or friend) protected health information as defined by the HIPAA law in the U.S. This is similar to sharing your personal experience on a blog or any other website.

Sleepwalking: Lee's story

From NHS Choices YouTube channel: Lee started sleepwalking at the age of four. In this video he describes his sleepwalking episodes, including doing artwork despite having no interest in art, plus the physical side effects when he wakes up.

Also watch Sleepwalking in children.

Gout - Patrick's story - NHS video

From NHS Choices YouTube channel: Patrick, 54, was diagnosed with gout (a form of arthritis) 22 years ago. He describes the symptoms, treatment options and how he learned to live with the condition:



Here is a list of some of the new drugs for an old disease (gout):

Febuxostat is a non-purine-analogue inhibitor of xanthine oxidase that opened a new era in the treatment of gout.

Modified uricases

The use of modified uricases to rapidly reduce serum urate concentrations in patients with otherwise untreatable gout is progressing. Pegloticase, a pegylated uricase, is in development.

JAMA update, 08/2011: New Treatment Offers Hope for Patients With Severe Gout: pegloticase (Krystexxa) costs $2,500 per dose (http://goo.gl/gz9sO).

Drugs in development

Transport of uric acid in the renal proximal tubule and the inflammatory response to monosodium urate crystals (shown above) are targets for potential new treatments.

Several pipeline drugs for gout related to the targets above include:

- selective uricosuric drug RDEA594

- various interleukin-1 inhibitors. Canakinumab (trade name Ilaris) is a human monoclonal antibody targeted at interleukin-1 beta. It was rejected by the FDA panel in June 2011.

References:

Gout therapeutics: new drugs for an old disease. The Lancet, Volume 377, Issue 9760, Pages 165 - 177, 8 January 2011.
Diuretics, beta-blockers, ACEi, non-losartan ARBs associated with increased risk of gout vs. CCB lower risk. BMJ, 2012.
With FDA Approval, a Gout Drug Now Costs $5 Instead of Pennies - WSJ, 2011.
FDA Panel Rejects Gout Drug Canakinumab on Safety Concerns http://goo.gl/lO9uy
The strange story that links gout with the birth of the cocktail drinks. Lancet, 2012.

Comments from Twitter:

francis berenbaum @Larhumato: Gout explained by a patient. Very informative for medical students.

Alopecia: Gita's story

NHSChoices: Hair loss, or alopecia, affects an estimated 8 million women in the UK. In this video Gita Mendis talks about her experience of alopecia areata, how she felt when she noticed her hair loss and the treatment she received.

http://www.youtube.com/watch?v=L5dp2t1JZXE

We Need To Talk | A Story of Loss and Hope - Johns Hopkins' video on depression

"Millions of people suffer from depression. Many suffer in silence. Effective treatments for depression exist, but only half of those who are depressed seek help. View this video, sponsored by the Healthy Community Partnership, to learn how important it is to start the conversation about mental illness. It could save a life."



Here is a related resource: Managing Your Depression: What You Can Do to Feel Better (A Johns Hopkins Press Health Book):

African trypanosomiasis - killer coma - the evolving story of sleeping sickness (Lancet review)

Human African trypanosomiasis (sleeping sickness) occurs in sub-Saharan Africa. It is caused by the protozoan parasite Trypanosoma brucei, transmitted by tsetse flies.

With 12,000 cases of this disabling and fatal disease reported per year, trypanosomiasis belongs to the most neglected tropical diseases.

Life cycle of the Trypanosoma brucei parasites. Source: CDC, Wikipedia, public domain.

The clinical presentation is complex, and diagnosis and treatment difficult. The available drugs are old, complicated to administer, and can cause severe adverse reactions.

Imagine a disease that starts with a fly's bite and ends in death. The first stage of this disease causes non-specific symptoms such as itching and joint pains. If left untreated, it progresses to the second stage weeks, months, or even years later in which the affected person displays dramatic neurological and psychiatric symptoms before slipping into a fatal coma.

New diagnostic methods and safe and effective drugs are urgently needed. There is no field-friendly diagnostic test.  Until recently, the most effective treatment for the second stage as almost as dangerous as the disease.

Vector control, to reduce the number of flies in existing foci, needs to be organised on a pan-African basis.

References:
[Seminar] Human African trypanosomiasis. Reto Brun, Johannes Blum, Francois Chappuis, Christian Burri. The Lancet, Jan 2010.
Killer coma: the evolving story of sleeping sickness treatment. The Lancet, Volume 375, Issue 9709, Page 93, 9 January 2010.

Can You Tell Your Life Story In 6 Words?

Larry Smith and Rachel Fershleiser talk to NPR about the fun and the challenge of capturing real-life stories in six little words.

Some examples related to medicine:

Alzheimer's: meeting new people every day.
Phil Skversky

After cancer, I became a semicolon.
Anthony R. Cardno

Normal person becomes psychotic on Twitter.
Robin Slick

Yale at 16, downhill from there.
Anita Kawatra

References:

Can You Tell Your Life Story In Exactly Six Words? NPR, 2010.
FDA Approves "Alzheimer's CT scan" by Eli Lilly - radioactive agent florbetapir tags clumps of sticky amyloid in brain. WSJ, 2012.

Cirrhosis: Phil's story

From NHSChoices: Many people enjoy a drink in the pub after work without realising how social drinking can damage health. Phil didn't realise the harm his alcohol intake was doing until he was diagnosed with cirrhosis of the liver. He talks about his experience and the shock he felt at being diagnosed.

Related reading:

Cirrhosis - JAMA Patient Page, 2012.