Journal of Genetic Syndromes & Gene Therapy
Open Access

Helping patients cope with, and recover from the effects of living with a rare disease: A patients perspective

5^th Annual Congress on Rare Diseases and Orphan Drugs

August 29-30, 2018 | Boston, USA

Mark Landiak

Corporate Dynamics, USA

Scientific Tracks Abstracts: J Genet Syndr Gene Ther

Abstract :

In addition to facing the health challenges that living with a rare disease presents, patients must also deal with the mental challenges of coping with the disease on a daily basis and the physical challenges of recovery. This presentation highlights some of the non-clinical support that physicians, nurses and other caregivers can provide to help patients cope with the frustrations that come with being a rare disease patient and trying to maintain the best quality of life possible. Like many patients with the rare disease, Mark Landiak suffered through almost a year of misdiagnosis. After dozens of tests and several near-death experiences, he was finally diagnosed with Cardiac Sarcoidosis. The illness came out of the blue and like many patients, he had never been seriously ill before. �??No one teaches you how to be a patient. You have learned mostly on your own.�?� Healthcare providers (as well as family and friends) have a tremendous opportunity to go beyond the tests and medications to help patients with the coping and recovery process. In this session, we will examine some specific actions that can be taken to support the patient once they leave the office. We will define what world-class treatment looks like from the patient�??s point of view and how you can help provide this regardless of your level of patient interaction. Attendees will leave with specific steps for enhancing patient care and providing increased value to improve every rare disease patient�??s quality of life. Patients will walk away with easy to implement strategies for getting the most from the doctor/patient relationship as they work through the symptoms and stages of their disease.

Biography :

Mark Landiak was an active sports enthusiast and entrepreneur who up until 2011 had never spent a day in a hospital. That all changed when he was diagnosed with a rare disease called cardiac sarcoidosis. His 28 years as a consultant solving business problems suddenly ended when he could no longer work. He then turned his attention to solving the problems associated with living with a debilitating disease that few people had ever heard of. Mark recently released a book called "Getting Better" which details the strategies he learned to help patients (and families) cope with a debilitating disease and recover to have the best possible quality of life. 100% of the net proceeds of this book go to the Foundation for Sarcoidosis Research for research and patient assistance. Fortunately for Mark, his program was successful as he is now back to work and actively advocates as a speaker and volunteer on behalf of patients suffering from the rare disease.

E-mail: mlandiak@corpdyn.com