Monday, November 26, 2012

A glimpse into a Doctors efforts to help someone with a Rare Disease

We would like you to read about Dr. Jeremy Latimer and his experience so far with medical schooling and his personal challenge in helping a patient get tested for Porphyria and to find them to help them.  I would like to first of by stating we appreciate your time and efforts to help support patients with rare diseases.  Here is Dr. Latimer's background.
 As for my background. I am a 35 year old resident in Internal Medicine at Florida State University/Tallahassee Memorial Hospital.  I became interested in the Porphyria a little over a year ago when one of my patients displayed all of the classic signs of acute intermittent porphyria. I decided to seek out patients with Porphyria on Facebook, to learn more about the disease and to answer questions in regards to patients' experiences that can't be found in textbooks. Unfortunately, by the time I had become convinced that my patient may have AIP, he had checked out of the hospital AMA due to frustration.  It seems to be a common theme with many porphyria patients, and one of the reasons I feel it is important to remain involved with the people I met through Facebook.  Many porphyria patients feel alienated from the medical community, and it is my hope that in time, this perception can be absolved.  As for my patient, I've tried to locate the him nearly every way I can think of, and he is nowhere to be found.  It appears that he may have been an undocumented immigrant, so I just pray that he finds the help he needs someday.  I left educational packets that I obtained from the APF in emergency rooms of several hospitals near the area that I worked at, with a letter asking physicians to keep a look out for him, so that if he indeed does have an acute porphyria, he can receive the care that he needs.  

As for my background. I began my career in medicine somewhat late in life. After beginning college as a piano performance major, I switched to psychology at the University of Florida. During my senior year of college, I began volunteering at Shands hospital for one of the classes I was taking, and also took part in research for neuroscience at the UF McKnight Brain Institute. I fell in love with working with patients, and decided to start a new career path the last semester of my senior year of college.  Before returning to UF to complete all of the pre-requisite coursework that I would need for medical school, I spent a year teaching earth space science in Jacksonville Florida, and then started graduate school in genetics at the University of Florida. In graduate school, I made the decision to take all of the pre-medical coursework alongside the coursework needed to obtain a masters in genetics. Halfway through my graduate program however, I made the tough decision not to finish my masters and apply to school in the US as I had originally planned. Rather, after completing all of the pre-requisite course work for medical school, I switched gears and left my graduate program to begin medical school at Ross University in the Caribbean. I immediately fell in love with the academic side of medicine and found the challenge to be everything that I had hoped that it would be. I spent two years studying in Dominica, and then completed my last two years of medical school rotating in various hospitals in Chicago. I then applied for residency in Internal Medicine with the intent of pursuing a career in critical care medicine. I completed medical school in the early spring of 2012, and before beginning my residency at FSU later that summer, I took a faculty position back at Ross University in Dominica for one semester, teaching clinical skills and biochemistry to first and second semester medical students at Ross.  My hope is to complete my residency at FSU, and undertake a fellowship at an academic medical center where meaningful research for the porphyrias is being conducted. I would like to contribute to the academic literature surrounding the many questions that we still have about this group of diseases, with the hope that one day, we will find a way to ease, or even cure, the damage that it causes to the human body. My hope is that one day, porphyria patients can lead the normal, pain-free lives that I believe everyone is entitled to have.
Thank you so very much for all of your fine efforts to help people who may have a rare disease such as porphyria.  I can speak from experience that waiting and hoping for proper testing, diagnosis, treatment, having proper knowledge of Porphyria for self and finding a willing Doctor to think outside the box and do what is best for the patient. 

Picture is Desiree Lyons and Jeremy Latimer

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