Meet e-patient Angel

Written by Silja on 17 September 2011 in epatients - No comments

Ángel and I have known each other for a long time (esp. if you count in social media years). I met Ángel via twitter, because he and his community ideagoras have been part of #hcsmeu from the start. He is also THE most passionate evangelist in Spain when it comes e-patients and how pharma should engage with them. It came as a total surprise to me though to find out that Angel since his diagnosis with a rare disease has become an active e-patient as well.

Please also watch this video interview with Ángel, where he explains why and how he chose the popular US platform patients like me to connect with other patients

Hi Ángel, could you please briefly tell us who you are, what your patient experience was as well as what you do professionally?

 

My name is Ángel González, I am an advertising practitioner with 30 years of professional experience. Two years and a half ago I decided to entrepreneur setting up my own company. At that time, I was diagnosed after a DNA analytics with hemochromatosis, a rare disease that if its not detected on time lead to liver cancer.

Why did you choose to talk about your disease online?
I thought that, rather to hide my illness, it was worth doing share my experience as a patient via the Social Web. I had founded sites such as “This I believe” that were really inspiring and pushy to embrace the social conversation.

I strongly believe that social and sharing experiences can be healing. I want to change silent, I want to change stigmas and stereotipes about living and experience an illness. I want to collapse the establishment and politically correct.

What has been your experience with social media activism so far?

 

Because of my current professional activity, I am putting a great effort and enthusiasm in evangelizing about the reality and benefits of the social web. We do that by talking to audiences of pharma marketers, doctors and patients. From my patient standpoint, I belong to PatientsLikeMe and have my fellows-suffereres of hemochromatosis. We do share how we are facing the illness and have regular convos about experiences.

What would you like to see from doctors, insurances, government, Pharma as reactions to your online activity?

 

I would like to see them finally understand this reality and embrace it for improving in all counts. It does not matter the status quo, the regulatory environment…the most important issue is to have a positive mindset and be willing to assume risks…as well as successes and joy.

In your opinion, what are the best information sources online for your disease in Europe at the moment? Are there any from Pharma?
What information is missing?

At this moment, I am finding more valuable and trusty sources in online sites placed in the US. And not from Pharma sites in any cases.

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