Who We Are
We are a group of ICD patients, working together to give other ICD patients a platform from which to express concerns. From emotional adjustments and educational support to technology and medical advances, no topic is left untouched.
Hugo Campos
Hugo Campos, 43, knew little about ICDs when his doctor called unexpectedly to schedule an urgent implant. But from his hospital bed and with his laptop, Hugo had some time to research his device options and reach out to other patients for support.
An online marketing professional, Hugo understands how online social media is empowering, engaging and educating consumers of health care.
In January 2008, he founded the Bay Area ICD User Group along with two other Stanford Hospital patients, Julia and Guin. This monthly forum aims to empower patients and their families by educating them about their devices, and by encouraging them to ask questions, express their feelings and share experiences.
Hugo’s voracious appetite for investigating and learning has been crucial to his emotional recovery. “I wish to share this passion with others and instill in them a similar sense of skepticism, curiosity, and a desire to become an active partner in managing their conditions.”
A native of Rio de Janeiro, Hugo is a creative consultant for marketing and advertising companies in the San Francisco Bay Area. He resides in Oakland, Calif.
Mark Mazzo
In November 2005, Mark, a registered nurse, became 1 in less than 20 people to survive a cardiac arrest. He received an ICD shortly afterward, which introduced a new, challenging chapter in his life. From that moment forward, and with a penchant for exploring, Mark set out to learn about his device inside and out.
“Having a medical background was not enough to satisfy me with this new device,” says Mark, 46. “I have always had the drive to take on life situations with devotion and a ferocious need to learn.”
This inherent drive has encouraged Mark to pursue not only learning about various arrhythmias and heart conditions, but to study and become more involved with all aspects of living with an ICD. In May of 2006, three months after his ICD implant, Mark joined the ICD Support Group, an online information forum for patients and their families and friends. He quickly became a poster boy of sorts, a recognizable name among the site’s regular contributors. Within a year he was asked by the original founders to take the reins and steer the group forward. He obliged and continues in this role today.
“In just a few years, I’ve witnessed individuals become more self aware of their medical conditions and taken a more active role in their care,” say Mark. “Every heart patient and ICD recipient needs to know all they can to take control of their lives. Learning, living, knowing and understanding will empower them to do so.”
His goal of personally contacting every single site registrant has kept him on his toes. (“Give me time, I will do it!”) When he’s not in advocacy mode, Mark, who lives in upstate New York with his wife of 17 years, takes time out for his other passions: music, computers and cooking heart-healthy meals.
Mark runs the ICD Support Group board.
Guin Van Dyke
Guin Van Dyke, 51, was diagnosed with Familial Dilated Cardiomyopathy at the age of 41. There were no local support groups or the ability for patients to connect when her doctor told her she would need an Implantable Cardioverter Defibrillator (ICD) to help manage her heart disease. She felt afraid and alone.
A bookkeeper and medical assistant by trade, Guin is also an elected school board member who is passionate about the quality of education received by students in her community. This passion for learning (plus not wanting other patients to feel alone as she once did) motivated Guin to start a patient support group at Stanford Hospital in 2000.
“It is refreshing to find others who understand,” says Guin, who moderates two online support boards for ICD users. “It has also been rewarding to watch the groups grow over the years and to help those patients who experience emotional distress after ICD implantation.”
In December 2007, Guin met with Hugo and Julia and in the following January, the trio launched a forum of their own: the ICD User Group. The group has been a rewarding opportunity for her: It enables her to help other ICD patients cope with emotional adjustments and empower them to advocate for themselves.
An active supporter of both ICD and gastric Lap-Band patients, Guin lives in Sunol, Calif., with her husband of more than 31 years, her two college-aged children, and a few horses and sheep. In her spare time, she travels the world, not allowing the ICD to keep her home.
We are not victims and this is not a group where people can come to wallow in the “poor me” attitude.
Hugo Campos
Communications and PR
Hugo Campos, 43, knew little about ICDs when his doctor called unexpectedly to schedule an urgent implant. But from his hospital bed and with his laptop, Hugo had some time to research his device options and reach out to other patients for support.An online marketing professional, Hugo understands how online social media is empowering, engaging and educating consumers of health care.
In January 2008, he founded the Bay Area ICD User Group along with two other Stanford Hospital patients, Julia and Guin. This monthly forum aims to empower patients and their families by educating them about their devices, and by encouraging them to ask questions, express their feelings and share experiences.
Hugo’s voracious appetite for investigating and learning has been crucial to his emotional recovery. “I wish to share this passion with others and instill in them a similar sense of skepticism, curiosity, and a desire to become an active partner in managing their conditions.”
A native of Rio de Janeiro, Hugo is a creative consultant for marketing and advertising companies in the San Francisco Bay Area. He resides in Oakland, Calif.
Mark Mazzo
Information Technology and Site Operations
In November 2005, Mark, a registered nurse, became 1 in less than 20 people to survive a cardiac arrest. He received an ICD shortly afterward, which introduced a new, challenging chapter in his life. From that moment forward, and with a penchant for exploring, Mark set out to learn about his device inside and out.“Having a medical background was not enough to satisfy me with this new device,” says Mark, 46. “I have always had the drive to take on life situations with devotion and a ferocious need to learn.”
This inherent drive has encouraged Mark to pursue not only learning about various arrhythmias and heart conditions, but to study and become more involved with all aspects of living with an ICD. In May of 2006, three months after his ICD implant, Mark joined the ICD Support Group, an online information forum for patients and their families and friends. He quickly became a poster boy of sorts, a recognizable name among the site’s regular contributors. Within a year he was asked by the original founders to take the reins and steer the group forward. He obliged and continues in this role today.
“In just a few years, I’ve witnessed individuals become more self aware of their medical conditions and taken a more active role in their care,” say Mark. “Every heart patient and ICD recipient needs to know all they can to take control of their lives. Learning, living, knowing and understanding will empower them to do so.”
His goal of personally contacting every single site registrant has kept him on his toes. (“Give me time, I will do it!”) When he’s not in advocacy mode, Mark, who lives in upstate New York with his wife of 17 years, takes time out for his other passions: music, computers and cooking heart-healthy meals.
Mark runs the ICD Support Group board.
Guin Van Dyke
Patient Support and Advocacy
Guin Van Dyke, 51, was diagnosed with Familial Dilated Cardiomyopathy at the age of 41. There were no local support groups or the ability for patients to connect when her doctor told her she would need an Implantable Cardioverter Defibrillator (ICD) to help manage her heart disease. She felt afraid and alone.A bookkeeper and medical assistant by trade, Guin is also an elected school board member who is passionate about the quality of education received by students in her community. This passion for learning (plus not wanting other patients to feel alone as she once did) motivated Guin to start a patient support group at Stanford Hospital in 2000.
“It is refreshing to find others who understand,” says Guin, who moderates two online support boards for ICD users. “It has also been rewarding to watch the groups grow over the years and to help those patients who experience emotional distress after ICD implantation.”
In December 2007, Guin met with Hugo and Julia and in the following January, the trio launched a forum of their own: the ICD User Group. The group has been a rewarding opportunity for her: It enables her to help other ICD patients cope with emotional adjustments and empower them to advocate for themselves.
An active supporter of both ICD and gastric Lap-Band patients, Guin lives in Sunol, Calif., with her husband of more than 31 years, her two college-aged children, and a few horses and sheep. In her spare time, she travels the world, not allowing the ICD to keep her home.
Who We Are Not
We are not doctors. We will not provide medical advice nor will we be involved in any issues that should be directed at a medical professional. IE. We might be able to tell you what a setting means on your interrogation report, however we will never recommend what those settings should be.We are not victims and this is not a group where people can come to wallow in the “poor me” attitude.
Labels: mission
posted by Hugo Campos at
Tuesday, January 01, 2008
