Loeffler's syndrome: Justin's journey - WNDU-TV
Loeffler's syndrome: Justin's journey - WNDU-TV |
Loeffler's syndrome: Justin's journey - WNDU-TV Posted: 20 Nov 2019 02:10 PM PST Loeffer's syndrome is a serious but rare respiratory infection that can take doctors months to diagnose. In the most severe cases, that critical time can lead to organ damage. ![]() This is Justin Wang's journey and how he was able to beat the odds. Chow mein with extra veggies is Justin's signature dish. The 16-year-old is so into cooking that he's even written a cookbook, a big deal considering that up until a few months ago he was on a gastrointestinal feeding tube. "My health growing up wasn't the best," Justin said. "When he was barely 2 years old, we felt something terribly wrong with him," said Yang Wei, Justin's mother. Rashes and a fever were a few of his symptoms, but it was a blood test that led doctors to a diagnosis of Loeffler's syndrome. "Loeffler's is super rare, and it's a blood disorder when you have too much oesenphile, which is a type of white blood cell," Justin said. "One of the many problems with having this disease is that these cells can build up in the heart and cause the heart not to function well," pediatric cardiologist Dr. Seth Hollander said. A chemotherapy drug was able to slow down the disease, but not before his heart started failing. At age 6, Justin had the first of two open-heart surgeries. "But we knew from a pretty early age that at some point he was going to have to have a heart transplant," Hollander said. That reality came last year. "My health was decreasing at an exponential rate," Justin recalled. "Justin was really lucky. He was only on the heart transplant list for 17 days before we found a donor," Hollander said. "His life is a miracle," Wei said. "Out of the over 400 transplants we've done here, he is the only child with Loeffler syndrome," Hollander said "I still have Loeffler's syndrome to this date, but it's being very controlled. And it's going to be all right from now on," Justin said. Loeffler's syndrome can affect other organs beside the heart, including the lungs and liver. Justin is now focused on educating others about it and encouraging organ donation with his blog. MEDICAL BREAKTHROUGHS BACKGROUND: Loeffler's syndrome is a form of eosinophilic pulmonary disease characterized by absent or mild respiratory symptoms (most often dry cough), fleeting migratory pulmonary opacities, and peripheral blood eosinophilia. Parasitic infections, especially ascariasis, may be the cause, but an identifiable etiologic agent is not found in up to one third of patients. The diagnosis of Loeffler's syndrome is based on characteristic and often transient respiratory symptoms, chest x-ray findings, and peripheral blood eosinophilia. It requires the exclusion of other types of eosinophilic lung disease. For example, acute eosinophilic pneumonia is a distinct entity with acute onset, severe hypoxemia, and typically a lack of increased blood eosinophils at the onset of disease. (Source: https://www.merckmanuals.com/professional/pulmonary-disorders/interstitial-lung-diseases/l%C3%B6ffler-syndrome) SYMPTOMS: Seth Hollander, MD, a Pediatric Cardiologist, Medical Director, Pediatric Heart Transplantation at Lucile Packard Children's Hospital Stanford talked about the symptoms, "In Justin's case, there was a noticeable weakening of his heart that we were able to see on a heart ultrasound called an echocardiogram. So it was very clear early on that his heart was suffering as a result of this disease. And when your heart's not functioning well, we call that heart failure. When you have heart failure, a number of things can happen. You can tire easily. You can breathe fast. You can have trouble eating and have trouble gaining weight. These would be typical symptoms of heart failure and things that Justin had to fight basically throughout his childhood." (Source: Seth Hollander, MD) MOVING FORWARD: Dr. Hollander said, "Loeffler's is a lifelong condition, and so his body will continue to produce these abnormal cells and he will continue to require medications to try to suppress his body's natural tendency to produce these cells. In addition to his heart transplant we are continuing him on his medical therapies so as to best prevent this happening in his new heart. Whether or not his new heart will suffer from the effects of the Loeffler's syndrome - we'll just have to see over time." Justin Wang says that he is still taking a chemotherapy drug for his Loeffler's syndrome. Although he takes heart transplant medications, he says he is healthy and should not be at risk for any other health problems as he ages. (Source: Seth Hollander, MD & Justin Wang) |
Posted: 01 Oct 2019 12:00 AM PDT Media Advisory Tuesday, October 1, 2019 WhatA new study published this week online in Emerging Infectious Diseases suggests that transmission of a protozoan parasite from insects may also cause leishmaniasis-like symptoms in people. The parasite, however, does not respond to treatment with standard leishmaniasis drugs. The research was conducted by scientists at the Federal Universities of Sergipe and São Carlos, the University of São Paulo, and the Oswaldo Cruz Foundation, all in Brazil, along with investigators at the National Institute of Allergy and Infectious Diseases (NIAID), part of the U.S. National Institutes of Health. Leishmaniasis is a parasitic disease found in parts of the tropics, subtropics, and southern Europe. It is classified as a neglected tropical disease and is often transmitted by the bite of some sand flies. The most common forms of leishmaniasis are cutaneous, which causes skin sores, and visceral, which affects several internal organs (usually spleen, liver, and bone marrow). According to the World Health Organization, each year between 50,000 and 90,000 people become sick with visceral leishmaniasis (kala-azar), a form of the disease that attacks the internal organs and is fatal in more than 95 percent of cases left untreated. During the last several decades, researchers have described rare cases of patients co-infected with both Leishmania and other groups of protozoan parasites that usually infect insects, including Crithidia. The current study of parasites isolated from a Brazilian patient confirms that Crithidia parasites also can infect people. The 63-year-old patient initially sought treatment for the symptoms of visceral leishmaniasis, including weight loss, fever, anemia, and an enlarged liver and spleen. However, after eight months of standard leishmaniasis treatment, the patient's symptoms had not improved. The patient developed widespread skin lesions with poorly defined edges (unlike the small lesions with well-defined edges that sometimes appear after treatment for visceral leishmaniasis) and ultimately died. To determine the cause of disease, researchers cultured parasites taken from the patient's bone marrow and skin lesions, sequenced their genomes, and discovered that the parasites were not closely related to known disease-causing Leishmania parasites. Instead, they were more closely related to Crithidia fasciculata, a parasite that usually colonizes mosquitoes. To confirm that these Crithidia parasites could infect mammals, the researchers exposed mice to the parasites isolated from the patient, both intravenously and by injection into the skin, and found that both types of parasite infected the liver. The parasites collected from the patient's skin also caused skin lesions in the mice. The study raises concerns that the Brazilian patient might not be an isolated case. If Crithidia infections represent an emerging infectious disease in people, there will be an urgent need to develop novel effective treatments, the researchers write. They expressed concern that the disease may be mosquito-borne because Anopheles and Culex mosquitoes can host the Crithidia parasite. More research will be needed to find other human cases, confirm the parasite's range and host species, and discover potential treatments, the authors note. ArticleMaruyama et al. Non-Leishmania Parasite in Fatal Visceral Leishmaniasis–like Disease, Brazil. Emerging Infectious Diseases DOI: 10.3201/eid2511.181548 (2019). WhoJosé M. Ribeiro, M.D., Ph.D., Chief of the Vector Biology Section in NIAID's Laboratory of Malaria and Vector Research, is available for comment on this study. NIAID conducts and supports research — at NIH, throughout the United States, and worldwide — to study the causes of infectious and immune-mediated diseases, and to develop better means of preventing, diagnosing and treating these illnesses. News releases, fact sheets and other NIAID-related materials are available on the NIAID website. About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov. NIH…Turning Discovery Into Health® |
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