*This machine-generated transcript may have errors. If remediation or a manually-generated transcript is needed, please contact NLM Support at https://support.nlm.nih.gov.* so you have Hansen's disease. Even though you may have been ill for some time, we know that being definitely diagnosed with this disease has probably been a shock to you by now. In addition to shock you may be experiencing other emotions as well. Fear and uncertainty, dread and dismay. Or maybe you're just plain scared and angry. While such feelings are quite normal under the circumstances, we'd like to relieve your mind as much as we can. The best way to do that, we think, is by giving you accurate facts and information about Hansen's disease and through television, we'd like to introduce you to five of Carville's staff members who can give you accurate facts and information. We've asked these staff members representing the clinical and rehabilitation branches to speak to you briefly on their area of specialty and how it may relate to you. First, we would like for you to meet Dr Robert Jacobsen as chief of the clinical branch. Dr. Jacobson directs our medical staff of doctors and nurses. I am pleased to have this opportunity to welcome you to Carville and to talk to you today on videotape about your illness. I believe that what I tell you will answer most of your questions. But if not, please don't hesitate to ask your doctor about anything that concerns you. I am convinced that the more you know about your disease the more smoothly treatment will go now. Hansen's disease is an infection, which can involve the skin the nerves, the eyes and the nose and throat. Mild cases referred to as tubercular oId will involve only a small area of the skin and one or two nerves, while more severe types called I'm Orpheus and the prominence may involve most of the skin and many nerves, as well as the eyes, nose and throat. It is caused by a bacteria which is known as mycobacterium leprae, which in many ways is like the one that causes tuberculosis. Because the disease involves nerves, it can lead to loss of feeling or numbness in some areas or weakness in the hands, feet or face. Some of you will already have these. When your disease is diagnosed, we can help you adjust to it and often at least partly correct any weakness with surgery. Those of you who have no significant weakness or numbness have an excellent chance of avoiding these problems. If you faithfully follow your doctor's directions regarding treatment while you are here at Kerrville, you will, of course see many patients who have severe deformities or blindness in most of these. This occurred many years ago before we had so many effective medicines to manage this disease and therefore probably would not have occurred today In a few of these things are the results of not taking treatment as it was prescribed and could have been avoided had they followed their doctor's advice. It is very unlikely that any of you will end up with severe problems. Treatment will usually be with a drug we call DAP sonar DDS, although some of you, for various reasons, may be advised to take other medicines or more than one medicine. Your doctor will always carefully explain the reason for this to you and ask that you sign a consent giving your permission for him to prescribe these for your case Those of you with mild disease may need to take treatment only a few years, but those of you with severe disease will need to stay on it for life. This is necessary because we know that a few living bacteria may still remain hidden away in nerves or elsewhere. Taking medicine for life will then protect you from the disease ever becoming active again. Periodically, we will check the effectiveness of your medicines and treatment by routine tests such as skin smears or skin biopsies. All of the drugs we prescribe are very safe, and you can take any of them at home. Those of you taking an investigational drug may have to return every 2 to 6 months for follow up. However, even if this is not the necessary, any of you with more extensive disease may benefit from returning here every year or two for a brief visit to let us evaluate how treatment is progressing. How long this your first visit here will last depends very much on how many problems you have but usually 1 to 2 weeks is sufficient. I'm sure many of you worry about where you got your disease. For most of you, it will never be known. It probably, however, resulted from unknown contact with another patient several years ago. The reason for this long time between exposure and appearance of the disease is that the bacteria that cause it grow very slowly. The numbers of your family have less than one chance in 10 of also developing the disease, and even if they do, they may not have gotten it from you, but from the same contact that gave you your disease. If you take your treatment regularly, your disease will become non contagious very quickly and will stay that way as long as you continue the treatment as prescribed by your doctor Because your family has been exposed. However, they should be checked by your local doctor or the doctor here at Kerrville once or twice a year for at least five years and sooner. If any unusual skin changes, numbness or muscle weakness occurs when you leave here, you should be able to lead a completely normal life, except for any limitations that numbness or weakness you already have may impose on you. You can live with your family, work at your usual job and associate with your friends just as you always have. You can in fact, expect to have a normal lifespan, since this disease has no significant effect on how long you will live. Finally there are a few things that you should keep in mind when you leave. First of all, if you have any areas of numbness that might be injured in the course of your normal daily activities, learn the various ways you can protect them while you are here and put into practice what you have learned When you get home. Your doctor, occupational therapy and others will be glad to help you with this If you do develop any injury, see that it is promptly cared for. Secondly, some of you will later get what we call reactions. Your doctor will talk to you in more detail about this and advise you what to do. But briefly, this usually appears with fever and tender red bumps on the skin or swelling of your old skin spots. Pains in some of your nerves, aches in your joints and so on may also occur. It is very important that you see your doctor at once. If this should happen, since it can be treated and in this way, damage to your nerves and skin can be reduced or avoided entirely. In some cases where reactions last a long time, we may advise you to take one of our investigational medicines to control it. Problem, by the way, is not caused by any of your medicines, but instead it is the result of either a kind of allergy to the products of the bacteria being killed by the medicine or to an improvement in your immunity with treatment Thirdly, although there are no major limitations on your activity, you should avoid excessive exertion or emotional stress as far as possible, since these may sometimes lead to the reactive episodes I have just described. Get plenty of rest and eat properly. Lastly, always take your medicines as prescribed. You can only hurt yourself by missing doses of the medicine again. Don't be afraid to ask questions. We're all here to help you in any way we can. Thank you. Next. We would like for you to meet Sister Merida, chief of the pharmacy department. This is your pharmacy, and I would like to familiarize you with the pharmacy service you'll receive well. Carville, The most important medication used in this hospital are the anti leprosy drugs. There are several types of medicine available for the treatment of hands and disease You may be put on one or a combination of some of these medications as your place on this medicine. The effect of each will be explained to you. It is very important, and I cannot stress enough the word important that you follow your doctor's order regarding your treatment. This includes your compliance with drug therapy. The pharmacy is talking in such a way as to meet any kind of therapy you might need. Like in the course of your stay at Carville, the doctors treat the whole person so you could be placed on additional medication if needed. An example of that will be if you're a cardiac, you'll be placed on medication for your heart. And if you're a diabetic, you'll be placed on medication for your diabetes. The role and the responsibility of the pharmacy personnel is to cancel the patient. As to the safe and effective use of medication, communication is a tool that we will use. We have by the pharmacy window a poster which reads before you leave. Please be sure you understand all directions on how to take your medication to better understand your doctor prescription, read and follow the instructions on the label of your medication containers. They will tell you exactly when and how to take them, and they are properly labeled. Should you have any question whatsoever regarding your drug therapy Peace? Uh, feel free to contact your pharmacy or your pharmacy technician will be very glad to help you. Thank you. Now meet Mr Harry Berg called chief of the physical therapy department The physical therapy department is concerned with hands and feet. Hansen disease often involves the nerves which affect your feeling in your hands and your feet, and also sometimes affects how your muscles work and your hands and your feet. So physical therapy primarily works and is interested and how the hands and feet work. Now we mainly work in three general areas. The first. If you just have been admitted to the hospital, you would come for an evaluation in which we would check for the nerve damage by several different methods, which we'll talk about it a little bit The second thing is we often teach exercises, uh, for your hands, feet and lower legs which can sometimes strengthen muscles and prevent some deformity The third thing, and probably the most important thing we have to offer, is to try to help you the patient. Understand the problems that you may have with your hands and feet so that you can do better at your home and prevent more problems that may arise. Let's look at some of the tests that we may use when you first come to the physical therapy department. One. We take a footprint test. I'll show you one. This is an example we have. You walk on a mat and when you finish, it shows where the high pressure points are on your feet. As you can see in this footprint, the largest pressures in the center of the 4 ft. This may be an area that may take a special sort of in Seoul in your shoe. If you had some problem with sensation or the feeling in your foot, another thing we would probably do is check your sensation, how well your hands and feet feel. We often use a little nylon, and we would check different areas and see how well you feel. We may do this on your feet as well. Another test We would test your muscle function. We would see how well your foot works. Can you pull your foot up Can you put your foot down properly We may check your hands, See if you can make this sort of position. If you can't make this position well, you may have a little nerve damage and your hand may get in this sort of position. We would also test your nerves and see if they are working properly or not. And we use an expensive type of machine to do this sort of test called a nerve conduction test. We also sometimes check temperature. We have another expensive machine that finds if you have areas that are hot and these point out to areas which are inflamed and may lead to an injury if they're not treated properly. And this is really important when you have a hand or foot that lacks proper feeling. Okay, now that we have evaluated your problems and have an idea of what is going on with you, we try to do something about the ones that we can. One thing we mentioned before we teach you some special exercises to prevent any increase in your weakness or in your deformity. These are exercises that you can do on your own at your home when you were discharged If you have a lot of weakness, we may make a special splint for your hand or for your foot to maintain the proper positions. If you have a wound on your foot, we may make a plaster cast, such as somebody would have when they had a fractured leg in which you could then get up and walk around while the wound healed. Mhm. And most important, we try to help out you to understand how to take care of your own problems. If you have dry skin, which is often a problem enhancing disease, we can instruct you, or the occupational therapy department may help you learn how to soak in water and then put a lotion or Vaseline on your hands and feet to keep them moist and to prevent cracks. If you have calluses on your feet, we can show you how to care for those heavy calluses become problems and can create wounds. We can show you how to use sandpaper to remove those and keep those down to a minimum level. One can go over what areas on your hands and feet that you need to inspect for injuries. If you have a sensory loss and don't have proper feeling. There's certain things that you should look for and probably most important for your feet. If you don't have feelings that you have the proper footwear, there's a shoe shop which is nearby. The physical therapy department, which orders shoes, modifies them, makes any sort of changes that they need for you to do well. Some other things that you may see going on in physical therapy when you were here is that we help people before their surgeries If they have some sort of major hand or foot problem, they perform surgery, and physical therapy would help them with their exercises. And they're splitting around the surgery surgery time. Also, physical therapy usually and other hospitals takes care of the aches and pains that you get in your shoulder or your sprained ankles. And so we give exercises and have various heat treatments to help the needs. But our main purpose at this hospital, I think, is to try to help you understand the problems that may arise or that you presently have and be able to deal with them yourself. And if you ever have any questions while you're here we are always open to try to help you and answer them any way we can or send you to somebody else who could answer your questions. Helen Rahm. Sammy is chief of the occupational therapy Department. I'm going to talk to you about the care of your hands. Basically, there are three problems that could arise. You may have one of these problems. You may have all of them or you may never have any of these problems they will have to do with you're feeling. They also will have to do with the texture of your hands, whether they're dry, rough and scaly And it will do also have to do with the motion in your fingers. The problem of you're feeling okay may come about when you notice that you're cooking and you had part that was boiling and you put your hand over it and found that you burned your arm and you really did not feel that you could get yourself cut and not feel the pain. You may have some Kleenex in your pocket and you're reaching for that. And you can't feel that Kleenex any longer because you've lost the light touch in your fingers. These problems can be solved by wearing protective mittens when you're cooking or gloves. When you're doing your gardening, perhaps you have a key to open your door, and it is giving you traumas on your fingers, your breaking your skin Every time that you turn your key, you can pad all of these things. These are daily living items that you must watch and see that you take care of them so they're not hazardous. The the problem of your dryness in your hands can be remedied by soaking for 20 minutes every day, at least once daily. It's best to try to soak before you go to bed because you're going to put Vaseline on your hands to hold the moisture in. And at the same time you're going to do some massaging exercises, and you will also be doing some exercises. Two. Remedy the contractors that you might get in your middle joints of your fingers. The nerves that that govern your motion can become involved, and you may notice that your middle joints on your fingers are starting to bend downward. It may start with your little finger and your ring finger first But if you notice this then these exercises will be very good for that You put your palm of your right hand on the palm of your left hand and stroke out to the ends of your fingers. If you already have some slight contractors, this will help to give motion in your joints and also stretch your skin. You do that with the opposite hand the same way do these exercises, perhaps about 20 times and maybe two or three times a day on your admission to this hospital, you will have, um, the opportunity to come to occupational therapy. And we can explain more of these exercises and why we do them give you any literature that can help you, uh, refresh your memory on them. And be glad to answer any questions that you will have about these things that we're speaking of. And now meet Dr Margaret Brand of the Ophthalmology Department. I want to welcome you today to the eye clinic where I am right now, and in this place with Sister elaborate as my assistant, we see every patient who comes to the hospital. Perhaps you already have been here by the time you see this video tape now, you might say, Why do I have to come to the eye clinic? I had my glasses checked, and I'm under a doctor at home. Well, that's fine. Uh, if you don't have glasses that suit you, let me just say that we'll be pleased to try and help you while you're here But coming back to the question, why should people come to the eye clinic? Is there some reason in this disease that we want to know what's going on in the eye? The answer is yes There are definite problems, and some individuals may escape without any of them, and some people might have quite a lot of trouble. And we want to know if they're likely to what's going on and then be able to take the necessary steps and precautions so that we can control those problems. Yeah. Now you might want to know what kind of things we're looking for. First of all, like any other parts of the body, this disease affects the surface, the surface nerves. You've probably been told about the nerves, your hands and your feet. Perhaps you already have trouble there. Perhaps you haven't realized that you've got a nerve that comes up in the face and that makes the muscles of your eyelids work so that you can blink so that you can close your eyes when you go to sleep. Now if something happens to that nerve, you may not be able to do these things. You may just find that you don't sleep with your eyes closed or that you might have a blink that doesn't always work. Doesn't go the whole closing every time you try to close your eyes to shut, and you should be blinking about every 20 seconds to keep your eyes nice and moist and seeing well and feeling good So that's one thing that can happen. Another thing is that you might just lose a little bit of the feeling in your eyes so that even if they got dry, you perhaps wouldn't know it. And this can be serious. We want to find out whether you have a good feeling in your eyes good enough to protect them. And then in certain individuals, the bacteria actually can take up residents in the eyes. You might say they get into the front part of the eyes. Now, perhaps you know something about your I Maybe you know what I'm saying when I say the cornea that's like the crystal on your watch. The front clear part of the eye through which you're seeing is the window of your eye. Well, we can find out if you've got the organisms in there and they can get their quite early in the disease. And we want to know because it's important that we know exactly what is happening. What is the status of your eyes? You won't feel them. They won't hurt. You won't have any redness. You won't see any differently but we can find them. We can see them. I'll show you in a minute. The instrument that will sit you at and chick and then some individuals can also get inflammation in the eyes, and this can lead to problems if it's not controlled We want to find out if you have that inflammation, if you're likely to get it and or even to be able to tell you that you're not likely to get it, and that will be good news, too, I'm sure. Then there are some individuals who have a problem with glaucoma. It may be related to the Hansen's disease. It may be quite independent, but we want to find out about it. We want to know we want to be able to control it so that your eyes will stay good the rest of your life. And so while you're here at Kerrville, you will come to the eye clinic and we'll take your vision. Sister will do a tear test. By the way, you will meet sister elaborate When you come to, she's my clinic nurse. She will do some tests and I will do something. And then I will look at you with this instrument. It's a microscope a rather nice microscope, and I can see a lot of detail that wouldn't ordinarily show up. And you will come here for the first examination, and then you will come subsequently every three months if you were going to be here. But perhaps if you're going home, then we'll just say, Whenever you come in, come back and see us and get another check up. We want to keep monitoring new carefully. Well, you might say, Is there a chance I could actually go blind? And the answer to that is not very much chance providing providing you one take your medicine like we tell you. And two that you would know what to look for if I problems occur and that you would go to see a doctor or come back here. And if we give you instructions and give you drops like I was showing a minute ago and and you use those, then the chances are very good that whatever your problem, it can be controlled. But you might say even since I've been in this hospital I have seen people who have gone blind. Couldn't you help them? Well, the answer is for most of those people. They came here too late for us to do very much for them or they had not had treatment or they started on treatment and they didn't keep it up. Perhaps they thought they didn't need it, and their disease became worse again. And sometimes it is harder if the second time, if the disease gets worse, it's harder to take care of the eye problems. They can often be very severe, But don't let that happen to you. You just take your medicine like you're told and be faithful. And the chances are that even if we find the disease right now, the first time you come, we can say to you probably within months or within a year or two the disease will have cleared from your eyes. This doesn't mean to say you could never have another eye problem. Supposing you can't close your eyes. You'll always have a little bit of a problem. You'll always have to do something like using tear drops or shielding your eye at night. But we'll give you instructions about that, or you might have a little problem with inflammation, and we'll have to tell you what to do about that. The main thing is that you don't have to go blind. We've got you here in time and there's a good chance that you won't lose any site at all. And as I said before, we will watch for changes of your glasses prescription. If you have to have surgery, we can offer that we can do a lot of special investigations and if we can't do them here, we will send you over to New Orleans where they've got a very well equipped by department and they'll take care of you there and so we can look forward to some very hopeful and very happy years together. I hope that you'll always come back and see us and that you will come any time You have a question? We're here every day throughout the week. If I can't immediately see you just elaborate, perhaps can answer your question. Or she will set you up with an appointment to talk to me and to share with me any problem that you have. Don't worry. We do care We have equipment, we have the experience and we know that we can say fairly confidently, You're going to do fine. So that's just get on and work together and make sure that your eyes keep seeing just as they do today. We hope that you now have a clearer understanding of Hansen's disease, an understanding based on accuracy and not hearsay. We have a few more things we would like to show you. But first we would like for you to meet the director of our hospital. Dr John Trautman Hello. Speaking for all of us at Carville I want to welcome you. We're going to try to give you the best care possible at this hospital and help you to the extent possible. Otherwise I hope you stay here, however, will be a short one. Now, I know that hospital life is oftentimes not pleasant, but we are going to try to make it as comfortable as we can for you. And we want you to feel at home, no matter how long you stay here Now Carville is a much better place to be than it was some years ago. We don't call it a leprosy. Very um anymore. For instance the official name is the United States Public Health Service Hospital. And soon it will be called the National Hansen's Disease Center, which I think is another step in the right direction. We have rules, but we try to keep things a little bit relaxed and still give you the care you need. Carville is an excellent hospital, believe me. But we also know there is always room for improvement. Now if there's anything you feel we can do to make your stay here a better one, please let us know. Now the best way to do this is to contact a representative of the patient Federation, but the hospital staff and I are also available. If you feel you need to contact us personally still we know we won't be able to please everybody All of the time. We're going to do the very best we can. The staff that is going to care for you is the best in the world. Each of each of them is here to help you. So again, please accept my sincere welcome to Kerrville. Now, at this time, we would like to tell you a bit about Carville's history and then show you some of the unique aspects and activities of our hospital. Thanks. Yeah, yeah. When the first eight patients arrived in 18 94 from New Orleans, they found this crumbling plantation site known as Indian camp, the old Woodlawn Plantation the deserted home of a Confederate army general. The patients remained basically alone until four Catholic nuns, Sisters of Charity of ST Vincent de Paul, came to minister to them in 18 96. After being run by the state of Louisiana for 27 years, the hospital became a federal institution in 1921 today, the United States Public Health Service Hospital still stands near the banks of the Mississippi River with a proud international reputation for treatment, research and training related to Hansen's disease. The hospital is staffed by uniformed commissioned officers of the United States Public Health Service, the Sisters of Charity and federal Civil Service employees You may see either in uniform are in civilian clothes today. Carville like any other hospital, has departments such as X ray admissions, the laboratory surgery and others routine areas, which you have probably already seen our Macy during your stay. Right now, though, we would like to give you an inside glimpse of some of the other activities and services around Carville, which are available and might be of interest to you. A great deal of the activity at Kerrville centers around the recreation building on the first floor of the recreation building, you will find the patient's canteen as a focal point of activity. The canteen sells a number of items drinks, sandwiches, canned goods, fruit and toiletries. You'll also find the canteen is a lively spot for socializing and exchanging bits of news between friends are new acquaintances. Next door to the canteen is Carville's many post office offering. All of the regular postal services. The post office gives mail service five days a week and an important note. While you're here at Kerrville, your mailing address will be Pointe Claire Branch, Carville, Louisiana, 707 to 1. Find to television lounges, each furnished comfortably and with color televisions. You'll also find the movie theater, where late run movies are shown several nights each week, some of them with Spanish language soundtracks You can check the bulletin board by the canteen for movie titles and times and other special events. There's a patient library on the first floor to which offers an excellent selection of current newspapers, popular magazines and lots of best selling books. Library also has a wide selection of talking books available both on record and audio cassette. Claim the stairs. And on the second floor of the recreation building, you'll discover a grand ballroom often used for bingos, musical programs dances and fairs throughout the year. On a daily basis in the ballroom, you'll probably be able to find someone to challenge in a game of ping pong, maybe a hand of dominoes, our a game of poo and you'll also find to recreation specialist to assist you if needed. Looking out from the balcony of the ballroom, you can see a nine hole golf course used by patients, staff members and their invited guests. Golf carts, equipment and a few initial lessons are available for you. Invitational golf tournaments are held twice yearly at Carville and include golfers from surrounding areas who compete with the local golfers. If you enjoy the outdoors and water, you will find fishing, picnicking and paddle boating available at Lake Johansson, located on the back corner of the hospital grounds, several fishing rodeos are held on the lake in the spring and summer. Back indoors now and actually in house 24. Near the Recreation building is a unique feature at Carville, the shopping mall run mainly by patients. Why inside you'll find a barbershop to novelty shops. Washington area, a beauty shop bicycle repair shop and a bank office offering most banking services. Now, if you should have to stay at the hospital for a longer period of time you'll be assigned a room in one of the dormitories and you'll be able to take your meals in the patient's cafeteria and again if you have to stay for a longer period of time. You may be interested in the services of the vocational rehabilitation department. A counselor is available who can, after an interview suggest an activity for you, such as testing, training, employment are attending the local school. Various test can be conducted by the department and are usually done before a patient is sent for. Vocational training which is available either at a local trade school or college, are which may be arranged at a school in your home state. Also within the vocational rehabilitation department is an area known as manual arts. If you enjoy constructive activities, you'll be able to work with wood Are plexiglass projects. Patient employment may be a possibility for you if you're at the hospital for several weeks. Jobs may vary from hospital tour guide research Animal care attendant housekeeping aide Printing classman are maybe work in the sheltered workshop, making popular fishing lures. Mhm. No mhm Carvilles. Local school fully accredited with two full time teachers, conducts classes eight hours a day. You may check with the teachers if you're interested in educational opportunities. Aside from the various occupational and educational activities, a social work department is available at Carville and interested in talking with you and your family about aspects of your life which may be affected by a Hansen's disease diagnosis and hospitalization. Whether in your room or in their office, you may ask to see a male or female social worker and discuss any personal or family matter financial concern, housing or transportation problem you may encounter We might also mention that to full time chaplains Protestant and Catholic are available at Carville for matters of spiritual concern. Our counseling. You'll probably see the chaplains as they make their rounds, either in your room or possibly out in the hospital corridors. Uh huh. Located near the front of the hospital grounds, the Union Protestant Chapel and the Catholic Sacred Heart Chapel are open at all times and offer regular services. Church service times and many other announcements of events and activities are published in the hospitals Weekly paper called The Question Mark our QM. For short, this is a free publication distributed at various points around the hospital by the school's students. Another very unique activity at Kerrville we'd like to tell you about is the patient owned and printed International magazine called The Star The star disperses educational information on Hansen's disease to more than 100 foreign countries and the United States, with the circulation of about 100,000. Its purpose is to provide vocational rehabilitation to patients while promoting an educated public opinion on Hansen's disease. We'll mention also that reprints and educational materials about Hansen's disease are available at the hospitals training branch for your family and friends. The training branch will mail the materials for you at your request. Finally, during your stay at Kerrville feel free to ask questions when something is not clear to you. All of our staff members are here to serve you and make your stay as pleasant and profitable as possible. Mhm wow!