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Patient Advisory Board
|The Patient Advisory Board serves as the voice of the dysautonomia and caregiver patient population. Each member of the Patient Advisory Board brings his or her unique skills and background to the board. Patient Advisory Board members assist with speaking engagements, organizing fundraisers, conferences and awareness events, and many other tasks vital to the operation of a successful health advocacy organization.
|Amanda Johnson Aikulola, LPN|
Amanda has worked as an advanced Licensed Practical Nurse for the last 20 years in a variety of nursing settings. She specializes in endoscopy and perioperative nursing and has worked in outpatient surgical centers. She is certified in pediatric and adult advanced cardiovascular life support and an active member of the Society of Gastroenterology Nurses. In addition to working in the admitting, recovery room and procedure areas, she has been the marketing liaison, employee health nurse and anesthesia screening nurse. Amanda is also the site coordinator for the Rhode Island Blood Center and enjoys organizing charitable events at work and in her community. She was diagnosed with POTS, Sjogren's Syndrome and Ehlers Danlos Syndrome after battling unknown health problems for over a decade. As a result of her experiences, Amanda founded the popular Facebook group Dysautonomia Divas, through which she is organizing regional in person support groups across the US. Amanda is married with three children, two labradors and resides in Rhode Island.
|Roberto Salvatierra Duran|
Roberto is a medical student from Costa Rica. He began medical school in 1992, but two years later had to drop out due to serious health problems. He was diagnosed with panic disorder and agoraphobia. By 1998, he was feeling better and so returned to pursue his medical degrees, only to again have to leave school due to deteriorating health. Not one to be deterred from pursuing his dream, in 2002 he returned to medical school. He managed to make it through four years of medical training despite many health challenges. Once again, in 2006 his dream was put on hold when his health worsened. To help pay his bills, he began working with people who have panic disorder/agoraphobia and programming 'virtual world' computer games. He won accolades in the spanish and english speaking communities for this work. In 2010, Roberto's health took another turn for the worse. After many years of misdiagnosis, Roberto was finally diagnosed with Conn's Syndrome and then POTS. Thankfully, many of his symptoms began to resolve after he began the proper treatments for these illnesses. By early 2012, he was feeling well enough to pursue a Pharmacy degree, launch an import business and return to medical school. He expects to graduate from Universidad Hispanoamerica in 2013 and begin his Internship. Roberto intends to focus his career on POTS and anxiety disorders. He is also interested exploring the role of alternative medicine in these disorders. He has three beautiful daughters and resides in San Jose, Costa Rica.
Kyla is a freshman at James Madison University in Virginia. She plans to major in Biology and minor in Chronic Illness, with the intent of entering medical school. Kyla has experience volunteering with other health related organizations, including the American Cancer Society and the Walter Reed Hospital Yellow Ribbon Fund. During her junior year of high school, Kyla experienced her third case of mononucleosis. Ten months later she was diagnosed with POTS secondary to chronic Epstein Barr Virus and Rheumatoid Arthritis. Not one to let health problems hold her back, she started a support group for POTS patients in her area, worked with a local pediatric cardiologist to educate medical professionals on how to recognize POTS and has given interviews on her experiences with POTS to the media. Kyla is the youngest member of Dysautonomia International's Patient Advisory Board, and she is very happy to be able to provide a voice for other young dysautonomia patients.
Kristina holds bachelorís degrees in both Communication and English from the University of Puget Sound where she also minored in African American Studies. She is now a northwest-based writer and former television producer and host of the award-winning Health Watch series. She has also worked in public relations and non-profit management. Her communication background has served her well in her professional endeavors as well as in her daily life as a dysautonomia patient. Kristina first became symptomatic her senior year of college following a routine wisdom-teeth removal surgery and was sent to a cardiologist who immediately suspected autonomic dysfunction. Less than a year later, she was diagnosed with Postural Orthostatic Tachycardia Syndrome after fainting at her college graduation. Since then, she has made it her mission to educate others about dysautonomia while striving to lead as healthy a life as possible. Kristina lives in the beautiful Pacific Northwest where she enjoys writing, recumbent biking and ballet.
David has been involved in supporting patients with autonomic disorders since June of 2007 when he founded a popular Facebook support group and website, "The Dysautonomia Connection." The website is home to a patient discussion forum with over 2,000 members. David has been asked to appear as a guest speaker before an audience of medical professionals at the symposium, Autonomic Disorders: A Practical Approach, hosted by Froedtert/Medical College of Wisconsin, as well as the Milwaukee Autonomic Disorders Support Group run by Froedert. David's interest in autonomic disorders inspired him to become a Registered Nurse. He just completed his first year in the RN program at MATC Milwaukee. His main area of focus in autonomic disorders is cardio/strength training and conditioning. David resides in Milwaukee, Wisconsin and has been diagnosed with Autonomic Dysreflexia, POTS, Small Fiber Neuropathy, Raynaud's and Mitral Valve Prolapse.
Amanda is a senior at Johns Hopkins University in Baltimore, Maryland, studying Behavioral Biology. She has helped organize a popular "Bowl Away Chronic Fatigue Syndrome" event for the past two years, to raise funds for research being done by Dr. Peter Rowe at Johns Hopkins Hospital. Amanda has worked as a Research Assistant for noted POTS researcher Dr. Julian Stewart at New York Medical College. She has been involved in numerous projects investigating mechanisms and treatments of POTS and Chronic Fatigue Syndrome, including a project to define "brain fog" and gain insight into its physiological basis. Amanda plans to attend medical school and looks forward to someday treating patients with dysautonomia and related conditions. Amanda developed symptoms of POTS in 2009 and was diagnosed with POTS and Ehlers-Danlos Syndrome in 2011.
|Jennifer Samghabadi, FNP-C|
Jennifer is a Certified Family Nurse Practitioner with 22 years of professional medical experience, including work in the neonatal intensive care unit, emergency medicine, perioperative, critical care nursing, staff development, supervising education programs, and serving as a Unit Director. She earned her Masters as Family Nurse Practitioner at SUNY Stony Brook, graduating Magna Cum Laude. She is a member of the American Nurses Association-NY, and the Long Island and American Academy of Nurse Practitioners. Jennifer has been active in helping to educate other medical professionals about autonomic disorders. Jennifer started feeling the effects of dysautonomia during her first pregnancy in 2007. She was diagnosed with POTS. In 2012, she was diagnosed with kidney cancer (renal carcinoma). Her POTS symptoms resolved after she had the carcinoma removed, along with 1/3 of her affected kidney. She resides and works in Long Island, New York with her husband and daughter.
Though she wasn't diagnosed with POTS until the age of 19, its suspected that Kyli has had the condition her whole life. Despite this, Kyli was determined to live as full a life as possible. When she was forced to quit her job at a pharmacy in 2005 due to illness, she turned her attention to the Dysautonomia community. She created a youtube channel (chronicallykyli) where she documented life with POTS. Here, she managed to reach out to thousands of other patients. She also started "POTS Pals," a program which pairs up POTS patients for support & encouragement. In 2007, she began selling photography at stores and festivals and used this as an outlet to spread awareness for the condition in her local area. In 2010, she helped start The Dysautonomia Connection, a website and forum with the sole purpose of bringing patients together for support and public awareness. She has participated in Jacksonville, Florida's Heart Walk as part of Team POTS, garnering attention for the condition there. Currently, she resides in North Carolina with her fiance Dustin, who also has POTS. Despite the challenges that come with being chronically ill, the couple inspires people around them with their "love conquers all" attitude. They are currently in the process of writing a book which will document their story. Kyli's diagnoses include POTS, Ehlers-Danlos Syndrome, and Chiari Malformation with hypopituitarism.
Teressa has over a decade of experience working on research projects and writing grants at the University of California-Davis, School of Veterinary Medicine. She is also a professional photographer and ran her own photography business for many years. Teressa has always been very active in her community. She has served on many boards and committees at her childrens' school, including serving as President of the Parent Teacher Association, and running a student club at the local high school. She also teaches and serves on several committees at her church. In 1998 her daughter became ill with a severe bleeding disorder. Her daughter is now 14 years old and has been diagnosed with Delta Storage Pool Deficiency, POTS, Gastroparesis and Ehlers Danlos Syndrome. Teressa has become active in the Dysautonomia community, educating herself and others about Dysautonomia. She very much looks forward to advocating for Sara and other patients. Teressa resides with her husband and two children in Visaila, California.
|Angela Yendes, R.N.|
Angela works as a Progressive Care Nurse on the Pulmonary Acute Unit for Palomar Hospital, which is part of the largest health care system in the state of California. She's a relief charge nurse, resource and floor nurse for her unit. Prior to becoming an R.N., Angela worked as a student nurse for Oncology at Tri-City Medical Center. Her compassion for people and motivation to help others led her to volunteer and raise money for different organizations and causes. Tri N For A Cause, MS, StarPal, March of Dimes, Angels Foster Family Network, breast cancer and POTS/Dysautonomia Awareness are a few fundraiser events Angela attends each year. Angela recently participated in the 2012 Oceanside Half Ironman Triathlon in order to raise money for POTS research and awareness. She is a member of many POTS support groups on the internet and her passion is to continue to raise awareness for all autonomic disorders. She was diagnosed in 2006 with Hyperadrenergic POTS. Currently, Angela lives in Oceanside, California and enjoys educating health care professionals and the public about Dysautonomia.