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February 28th is Rare Disease Day

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Rare Disease Day is an international annual campaign to raise awareness among the general public regarding the world’s rarest diseases and how they impact patients’ lives. According to www.rarediseaseday.org, Rare Disease Day “is also designed for patients and patient representatives, as well as politicians, public authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.”

 

 

 

IVUmed volunteer physicians and nurses often assist in the treatment of especially difficult or rare cases while training and serving in low-resource environments worldwide. One disease that is extremely rare in the United States but seen more often in tropical climates is lymphatic filariasis (LF), commonly known as elephantiasis, a painful and disfiguring disease. LF is most often acquired in childhood, though its visible manifestations occur later in life, causing temporary or permanent disability.

 

 

Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008 and has since hosted over 1000 events worldwide, with over 70 countries participating in the 2013 events. Check out the 2014 Rare Disease Day events list here for awareness events in your area.

 

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Ghana Opens World’s First FGM Reconstructive Hospital

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According to the online news source GhanaWeb, the world’s first hospital dedicated specifically to reconstructive surgery for women who have suffered Female Genital Mutilation (FGM) is opening next week in Bobo-Dioulasso, Burkina Faso, Ghana.

 

The hospital is called “Kamkaso,” meaning “the house for women,” and was funded by donation from worldwide volunteers and philanthropists totaling $400,000. It will open in  on March 7, 2014 and will serve West Africa.

 

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At Kamkaso, experts will “perform clitoral surgeries and also train interested surgeons to restore FGM victims to sexual and self-dignity”.  Communications Director Nadine Gary stated, “We hope the hospital will serve as humanitarian pilot project for other parts of Africa and it’s likely to be replicated in other parts of Africa”.

 

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An IVUmed pediatric urology team will be training Ghanian doctors and nurses and providing patient care in Kumasi, Ghana from March 1-9. We look forward to working with and training Ghanian medical providers during this trip and in the future, supporting Ghana’s efforts to improve surgical care for the children, women, and men of their beautiful nation.

 

To read more about Kamkaso Hospital, go here.

 

For updates on IVUmed training workshops and events around the world, follow us on Facebook and Twitter!

 

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Dr. Robert Edelstein: Friend of Haiti

Dr. Robert Edelstein first traveled to Haiti for humanitarian service after the catastrophic 7.0 earthquake in 2010. However, his commitment to helping improve medical training and patient care in Haiti was not satisfied through a single visit. He has just returned from his fourth IVUmed surgical workshop in Deschapelles, Haiti, working with fellow IVUmed volunteers to build sustainable urology capacity there. 

  Dr. Edelstein answered a few questions regarding his experiences volunteering with IVUmed and his insights on the benefits of educational and humanitarian medical service for the givers and receivers:

 

1. What has kept you inspired to volunteer in Haiti and work with IVUmed?  I first went to Haiti after the earthquake in 2010, because I felt a very strong need to help out in any way that I could.  I really didn’t know what to expect, but it ended up being a very productive trip.  While there, I felt that I had to return. The need for urologic services in Haiti is profound, and the strength and resourcefulness of the Haitian people is very inspiring. I had always wanted to work with IVU due to its experience, urologic focus, and commitment to teaching, and I have been lucky enough to do so in the years since.

2.  What have been the most challenging and most rewarding aspects of your IVUmed service so far?  The most rewarding aspect to me is having the opportunity to work with Haitian health care professionals. The trip gives an excellent opportunity to learn from each other’s experiences. There are many challenges, of course, but finding solutions together can be a great part of the experience. 

3.  What insights can you share with other medical professionals considering working with IVUmed or other humanitarian organizations?  The opportunity to serve outside of the United States is a uniquely challenging and deeply satisfying experience. Many of the things that we take for granted daily don’t exist in rural Haiti, and often new ways must be found to solve problems using the local resources. The depth of knowledge and resources that IVU has to work with is inspiring and reassuring on these trips.

For the latest information on IVUmed trips and events, follow us online: 

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Thank You for Supporting IVUmed in 2013

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We offer our thanks and appreciation to all IVUmed volunteers and donors of 2013! Your volunteer hours and generous contributions make possible our efforts to improve patient care and provide quality medical training worldwide. We look forward to a fantastic 2014!

 

Matching Gift Opportunity

Donors may still maximize their gifts by using participating employers’ Matching Gift programs. Check with your employer’s human resources or payroll department to verify participation. You may also refer to this partial list of U.S. corporate matching gift programs:> Read More 

 

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Anesthesia Open House: March 13th

Attend a volunteering open house for anesthesiology providers:

  • Learn about where IVUmed serves around the world

  • Hear current IVUmed volunteers share personal experiences from their service with IVUmed

  • Discuss the logistics and rewards of humanitarian medical service with IVUmed staff

  • Discover current opportunities to teach fellow physicians and bring quality surgical care to resource-poor communities worldwide!

 

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IVUmed is dedicated to building urological capacity in resource-poor areas of the world. Anesthesiologists are a crucial element of patient care and a valuable asset to the medical education we provide. Anesthesiologists are invited to join IVUmed medical teams to improve medical care and education in resource-limited parts of the world. For more information, please visit our website: www.ivumed.org or contact Amy at amy@ivumed.org.

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A Privilege: Final Entry from an IVUmed Nurse in Zambia

The final entry from IVUmed volunteer recovery nurse, Michael Felber, regarding his recent IVUmed humanitarian service in Zambia, shared from his travel journal:

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The last patients of the day seem to wake up more slowly. Often they have been under anesthesia longer, since shorter cases are usually scheduled earliest. I think by the end of the day they are also just more tired and hungry. By 6pm the local nurses and porters are ready to go home to their families, and I am sure are also a little concerned about missing the last bus home.Yesterday, Malasa, one of the nurses, was laughing and trying to wake up the patients. My patient wasn’t interested in waking up until she tugged on his earlobe and said “Boy, do you want to go see your mother?” He sat right up.  Douglas was still not interested in waking up, despite Malasa’s best effort. I told Malasa that I was going to wake her up at home on her day off, and she laughed. Finally, Douglas started to stir. We put a syringe of orange Fanta in his mouth and when the bubbles hit his tongue he startled. Then he began expertly sucking down the Fanta. By 6:30, everyone was on their way home.

 

So far, today has been pretty upbeat. For morning lecture, the residents played urology jeopardy. Everyone seems pleased with the number of children we have been able to treat.

 

Throughout the week, one operating room has remained open for emergency pediatric cases. They have ranged from routine appendectomies, removal of foreign bodies, to more complex cases. Yesterday a 5 day old baby was brought in with a malrotated bowel, like a twisted garden hose. By the time of her surgery her entire small intestines was necrotic from loss of circulation. The bowel had to be removed. She would need IV nutrition and ultimately a small bowel transplant, neither of which is available here.We watched her in recovery until she could be transferred to the ICU, where she will stay with her parents and receive comfort care. Today, a one week old premature baby was brought in for closure of gastroschisis, a condition where the stomach or bowel protrudes from the abdomen. In developing countries it is treated initially by suturing a sterile “silo” over the protruding bowel and gradually pushing it back into the abdomen. For this patient they used a sterile IV fluid bag and gradually compressing the end of it, like squeezing a tube of toothpaste. The baby weighed about 2.5 pounds, but was breathing well. It is amazing that he survived this far, but he still has huge obstacles ahead. Still, miracles don’t happen by themselves.

 

Complex patients and surgeries are scheduled in the beginning of the week so the team is available to deal with complications. Still, we are here to work, so a full day is planned. The last patients are as important as the first, so nobody can afford to let their guard down.

 

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By the end of today we will have treated over thirty children. It’s hard to measure results, though. Certainly numbers of patients treated and people trained are important, but you can’t measure up front how a surgery will affect an individual patient’s life, or what someone has learned from your teaching and your example, and what they will do with their knowledge.In medicine, you work with people and then you both move on. You rarely see the long term results of your work. There are far more built in obstacles than any individual or organization can change, but in the long run change is possible. Johnny Clegg, a South African musician, says in one of his songs that if you want a better future you have to “fetch it” yourself.

It’s also hard to measure the effect on ourselves, but I think it is overwhelmingly positive. At least most people I meet on these ventures want to come back. The imprints of experiences and people stay with you. Working with limited resources teaches you to be appreciative and creative. You learn not to waste your time or energy focusing on what you don’t have.And you learn again and again to regard your work as a privilege.

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Urology and Children: A Nurse’s Perspective

The continued account of IVUmed volunteer recovery nurse, Michael Felber, regarding his recent IVUmed humanitarian service in Zambia, shared from his travel journal:

 

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IVUmed missions have a focus on education. There is very little fanfare and the only visitors to the hospital are other doctors and medical students. The operating rooms are usually full of observers and IVUmed surgeons and anesthesiologists work together.

 

Many of the surgeries this week have been revisions of previous surgeries. Pediatric urology as a specialty doesn’t exist as a standalone specialty in most of the developing world. Children need different techniques and different care than adults do though, so specialized training is needed. It’s a dilemma for IVU. The best way to teach doctors surgical techniques is with primary surgeries, allowing them to learn how to do surgeries that won’t require a redo. At the same time, you can’t ignore the needs of children who are living with bad outcomes from previous surgeries.

 

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One of the common procedures is a hypospadias repair, a relatively common birth defect where the opening of the urethra is on the shaft or base of the penis instead of the tip. It is typically treated in infancy in the developed world. The implications depend on where the hypospadias is. If the urethra empties on the distal (tip) end the child may not be able to urinate straight, but otherwise function normally. If it is proximal (base of the penis), the penis will not be able to straighten. The child may not be able to urinate while standing, and eventually will not have normal fertility. The surgery to repair a hypospadias takes a couple of hours. The urethra is reconstructed to the tip of the penis, and the skin is closed with a graft, usually from the foreskin. The child has a catheter in place while healing. Probably the most common complication that occurs after surgery is the formation of a fistula. Instead of healing completely along the suture line, a second opening forms from the urethra to the shaft of the penis. The child will not urinate in a normal single stream and may “leak” urine after emptying his bladder. Repairing is complicated by excessive scar tissue or a shortage of soft, healthy skin available for grafting.

 

Another problem that requires surgical treatment is the formation of posterior urethral valves. Normally urine empties from the bladder through the urethra. Posterior urethral valves are malformed tissues that block this flow of urine, only allowing it to leak out under very high pressure. Children with this condition have chronically full bladders. The pressure forces urine into the ureters, which empty urine from the kidneys to the bladder. The additional pressure restricts blood flow to the kidneys, preventing normal growth and eventually starving the kidneys of oxygenated blood. In the short term children with this condition are incontinent. Over time they develop kidney failure. Surgical repair of post urethral valves requires specialized techniques and equipment. In countries where these are not available, the treatment may involve creating an opening from the abdomen to the bladder and placing a tube attached to a drainage bag. This relieves the pressure on the child’s bladder but greatly increases the risk of bladder infections and bladder cancer. Tubes and drainage bags need to be replaced frequently and urine can leak from the opening, and the associated shame and isolation impedes normal social development. In addition to teaching surgical techniques, IVU donates necessary equipment for this repair and teaches techniques that can be done with local resources and equipment.

 

The most complex treatment is for bladder exstrophy, a condition that results from insufficient room in the pelvis for the bladder. Instead it tries to form outside the abdomen, leaving an opening that drains urine continuously. The implications are complete incontinence, and heightened risk of abdominal cancer and infection. Surgical treatment requires reshaping the pelvis to accommodate the bladder, and reconstructing and reforming the bladder using grafts from other tissue. Because of the complexity, surgical reconstructions are often done in stages.   

 All of these conditions have significant impacts on the lives of children and their families. The suffering they cause is often discreet. Urological defects tend to be hidden behind a wall of shame and often these children are ostracized socially, and are unable to find employment or get married as adults. I think in the end all of these conditions affect people’s most basic sense of dignity.

 The last two patients are in the operating rooms.  One more day left.  It feels like I have been here much longer than a week, though.

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Separate Worlds Brought Together: A Nurse’s Perspective

The continued account of IVUmed volunteer recovery nurse, Michael Felber, regarding his recent IVUmed humanitarian service in Zambia, shared from his travel journal:
“We  are on the third day of surgeries. We wake up at 6, have breakfast, and drive to the hospital. Each day begins with a lecture or presentation for the Zambian residents and staff. Surgical cases so far have taken 1 to 6 hours. The rooms are run very efficiently, but time is spent teaching local surgeons and anesthesiologists with each surgical procedure.  The focus of IVUmed missions is on education, with the goal of each site having enough trained personnel to be self sufficient. Usually the first 10 minutes are the busiest, when the children are still asleep and needing close monitoring. If there are respiratory problems they tend to happen in time. Usually giving a little supplemental oxygen or repositioning their head is all that is needed to help them. When they are breathing on their own without extra oxygen we take out their IVs, using a little of the blood to screen for malaria. We make sure catheters and stents are in place and well secured, and they rejoin their parents.  At the end of the day we check on the patients on the floor.
The children here are very quiet and usually shy when  they  first meet us, but  when they are ready they have beautiful smiles.  We have toys and coloring books and Beanie Babies, which are given in pre-op and recovery.  They often seem bewildered by the toys at first. They seem pleased to have them but don’t get overly excited. What seems to matter to kids here are their parents and siblings and playmates.  Yesterday Sandra, a beautiful 4 year old girl, waited in recovery for us for her cystoscopy. She was quiet and a little withdrawn at first, but watched everything and everyone intently. I gave her a small stuffed animal. She nodded at me and took it, but remained quiet.  Pam, my partner in recovery, gave her a coloring book and some crayons. She looked at the crayons quizzically. We put them in her hand and showed her how to color. It took her a little while to get the hang of it, but soon she was filling up the page on her coloring book. She didn’t actually smile until we brought out the bubbles, though. She reached out to them and laughed when they broke on her hand, and loved blowing through the wand and watching them form. Gift, the porter and OR tech, arrived to bring her into the operating room. He spent a minute admiring her coloring, and then as he wheeled her out whispered to her “Say goodbye to them”.  Sandra smiled and waved.
The field of pediatric urology is very limited in the developing world, even though the need is enormous. This is my fourth experience working with IVUmed. In addition to urology, I often volunteer on missions that treat cleft lips and palates. Between the two, urological defects are usually more hidden, but the shame and debilitation are equally or more significant. Children with conditions that cause chronic urinary incontinence are often unable to go to school. When they mature into adulthood they face problems getting married, which in poor countries is often crucial to economic and social stability. Many urological problems ultimately result in cancer of the bladder or kidney failure, and people’s identity and sense of autonomy are closely tied to their gender, their sexuality, and their mastery of their own bodily functions.
There is a very basic need for human dignity. I think one thing parents all over the world have  in common is wanting a better life for their children. People all over the world seek acceptance in their families and societies, but the opportunities are not the  same for everyone.  How likely you are to have a long and healthy life is not just affected by your lifestyle choices. Where you are born and live matters greatly, especially for people who are not fortunate enough to begin life without the burden of a birth defect. There have been incredible advances in medical science in the last 100 years, and even in my lifetime, but the problem of ensuring access to the benefits of those advances  has proven to be much more perplexing.

In many ways the patients and staff here are a worlds apart from my own life experience. I sense that gulf every time I meet a new child, and see the shyness in their eyes. There is so much about their lives that I don’t know, but we all have the same need for acceptance, the same connections to our loved ones, and the same anatomy and physiology. We are in the end more alike and connected than different and separate.

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Cancer doesn’t hurt just the 20%

Dr. Eggener trains local physicians on urological oncology needs.

According to Reuters, “most of Africa’s around 2,000 languages have no word for cancer. The common perception in both developing and developed countries is that it’s a disease of the wealthy world, where high-fat, processed-food diets, alcohol, smoking and sedentary lifestyles fuel tumor growth.” However, according to the news service, sub-Saharan Africa will see an estimated one million new cancer cases this year — “a number predicted to double to two million a year in the next decade,” and, “[b]y 2030, according to predictions from the [WHO], 70 percent of the world’s cancer burden will be in poor countries.  Source

Cancers, including urological cancer, are not only a developed-world problem. An IVUmed board member, Scott Eggener, MD, is a urological oncologist based in Chicago who frequently travels to the West Bank to provide urological oncology training to local physicians.

However, the technologies needed to provide proper care of cancers are inaccessible to the developing world. The bioengineering and biotechnology fields in academic centers are acknowledging this large gap. Currently, several centers of innovation are working towards making proper medical care more accessible to the developing world.

To learn more about these innovations, you can check out several conferences on affordability and innovation in global health. Local to Utah, the Center for Global Surgery is hosting the  Extreme Affordability Conference  in late March 2013.

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Board member, Dr. Francis Schneck and daughter, Meghan recognized by local community for service in Zambia

Board member and Medical Services Committee Chair, Dr. Francis Schneck, recently led our workshop in Lusaka, Zambia. His daughter, Meghan, joined the team to help with logistics and interacting with the patients. Her high school field hockey team recognized her off-the-field time was worth it!

Read more: Mt. Lebanon field hockey player helps African mercy mission 

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IVUmed is committed to making quality urological care available to people worldwide.