Carl DeLine

Living With Sarcoidosis – Louis

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Carl: Hello Louis, I am grateful that one of our members encouraged you to become a part of this group. I have enjoyed reading your interaction with our membership. Your insights have been very helpful. What is it that drew your attention to sarcoidosis?

Louis: Having been in the health professions and teaching the last 30 years, I was well aware of sarcoidosis and how devastating it can be to those that have this terrible disease. A few years ago I had breathing problems and it stretched over a number of years. My condition went undiagnosed. So, I can empathize with those that have sarc.

Carl: Has your condition ever been identified? I am sorry, it makes life harder.

Louis: No it wasn’t. I should have followed it up but didn’t. I am fortunate because these last several years, I have not had any more of those breathing symptoms.

Carl: You have an interesting background. Can you tell us a bit more about yourself.

Louis: After four years in the Air Force, I began working in a medical laboratory in the local hospital where I was stationed at, Sheppard AFB in Wichita Falls, Texas. From there I started my teaching career in the clinical laboratory science department at Midwestern State University located in Wichita Falls Texas and then later at Texas State University in the same capacity. I retired as a full professor of clinical laboratory science in 2000. I was named a distinguished professor a year later by the Texas State Board of Reagents. This is the first time for someone to gain that honor in the College of Health Professions. I was asked to teach oncologic pathology in the Radiation Therapy Program there, which was a lot of fun. I did that for 10 years and then gave up teaching for good.

Carl: It feels good that you would be interested in us, you are presenting a gentler side to an otherwise sterile system.

Louis: It is puzzling to me that the cause for sarcoidosis has never been found. The answer is long overdue. I think the answer is there, elusive but waiting to be identified. I think too much emphasis has been placed on sarcoidosis as primarily a pulmonary disease, yet the pathology of the disease, the granulomas, is a result of an abnormal immune reaction to an unidentified antigen. That is the key, what is that substance that causes the body’s immune system to react and form the granulomas in the organs and tissues.

Carl: Many of us share those thoughts and feelings. How do you propose to figure this out?

Louis: My approach is to place sarc patients into what we call cohorts, individuals with the same classification. In other words place those that presented with sarcoidosis symptoms and resolved be placed in that grouping, another for those that developed acute pulmonary sarcoidosis, and yet another for those that the disease became systemic and spread from the lungs to other organs and tissues of the body.

Carl: will variables such as age at time of diagnosis, where people live(d) make a difference?

Louis: Certainly, there will be variables that will have to be analyzed and studied. Demographic questions from each cohort group will be carefully analyzed with a series of additional surveys starting with a complete medical background, familial (family medical histories), exposures to environmental substances and threats, and then follow up on these instruments. The data from each cohort group will be analyzed to see if there are commonalities among groups and factors that are excluding, in other words unique only to that cohort group.

Carl: In our membership we have been talking about defining moments such as trauma, birthing, genetics as having a possible bearing on getting sarcoidosis.

Louis: These elements will be a key part of the initial study.

Carl: What will you need from us to accomplish this study?

Louis: I will ask sarc patients to volunteer for the study and knowing the information will be held in strictest confidence. In fact, I will be assigning a cohort identification number to assure assistants and others having access to this personal information will be know only by me and other qualified colleagues. There will be no request for blood samples, during the initial study process. It is hoped that the second phase of the study will zero in on the causative agent for this disease, and at that time blood samples will be needed.

Carl: What other resources will you need to accomplish this task?

Louis: This type of a study will require about four to five survey instruments, the preparation, printing, mailing, return postage, follow up mailings, a computer to handle the amount of data collected, laser printer, a graduate assistant, possibly two or three graduate assistants, and a statistician to help with the analysis of the data and collation studies.  I ask no salary for myself. I am doing this to help those that have suffered and are suffering from this terrible disease. I hope to ask for a foundation grant from Texas State University, but that figure will be far short of the needed revenue to do the study justice. I estimate we are talking about $25,000.

Carl: I understand there will be a group site here for people to sign up.

Louis: I am honored to be a part of the sarcoidosis community, and will be looking forward to hearing from all those that volunteer to be part of the study.

Carl: Count me in, I will do my best to work with you to see this come to fruition.