Ella’s legacy: Turning tragedy into an international advocacy network for PVNH

By Yolaine Dupont Ella She was born in Vancouver, British-Columbia at 39 weeks, weighing 5 lbs. and 7 oz. With a nearly flawless APGAR score, her father’s mouth and nose, along with my eyes and full set of dark hair. Just as I imagined she would be, Ella was picture perfect. Still, I had an uneasy feeling. Ella was frail, and her breathing seemed off. I mentioned it to her doctor and nurse, only to be quickly reassured that all was okay. After five days, I took her home. But that upsetting feeling would not go away. The old expression “Mom knows best” turned out to be true. By Ella’s second month, she was admitted to the emergency room and was diagnosed with bronchiolitis, following a few tests. After a short stay, we were sent home. Two weeks later, cutting our trip to introduce her to family short, Ella went back into the hospital. A follow-up x-ray had shown a clear progression of lung disease, and doctors were careful to rule out food aspiration and the more scary diagnosis of cystic fibrosis. But nothing prepared us for what was to come. At 3 months old, Ella “the Zebra” (as she became known) was puzzling doctors. Her lungs were badly damaged, plagued by emphysema. We were told she was too young for lung resection or a transplant, despite the fact she was struggling to breathe. Her saturation would suddenly drop as low as the 40 and 30s. Ninety-six is the normal saturation at room temperature. After spending one month in the hospi...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: All posts Diseases & conditions Our patients’ stories Research cytomegalovirus our patients' stories PVNH Source Type: news

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Authors: Peter J, Khosravi M, Werner TJ, Alavi A Abstract OBJECTIVE: The purpose of this study was to evaluate the utility of global semi-quantitative analysis via fluorine-18-flurodeoxyglucose positron emission tomography (18F-FDG PET) at lateralizing seizure foci and diagnosing patients with unilateral temporal lobe epilepsy (TLE). METHODS: Seventeen patients with unilateral TLE (11 right TLE and 6 left TLE) were retrospectively selected for semi-quantitative 18F-FDG PET analysis. Twenty-three control subjects with a Mini Mental State Examination (MMSE) score of 29 or greater were selected for comparison. Glo...
Source: Hellenic Journal of Nuclear Medicine - Category: Nuclear Medicine Tags: Hell J Nucl Med Source Type: research
Authors: Mankahla N, Dlamini S, Taunyane IC, Maqungo S, Cairncross L, Chiliza B PMID: 30004352 [PubMed - in process]
Source: South African Medical Journal - Category: African Health Tags: S Afr Med J Source Type: research
Authors: Franco A, Balibrea N, Gimeno A, Merino E, Lopez MI, Santiago C, Perez Contreras F PMID: 30006233 [PubMed - as supplied by publisher]
Source: Nefrologia : publicacion oficial de la Sociedad Espanola Nefrologia - Category: Urology & Nephrology Tags: Nefrologia Source Type: research
We presently forget 98% of everything we experience. That will go away in favor of perfect, controllable, configurable memory. Skills and knowledge will become commodities that can be purchased and installed. We will be able to feel exactly as we wish to feel at any given time. How we perceive the world will be mutable and subject to choice. How we think, the very fundamental basis of the mind, will also be mutable and subject to choice. We will merge with our machines, as Kurzweil puts it. The boundary between mind and computing device, between the individual and his or her tools, will blur. Over the course of the ...
Source: Fight Aging! - Category: Research Authors: Tags: Newsletters Source Type: blogs
Authors: Jacob JE, Cherian A, Gopakumar K, Iype T, Yohannan DG, Divya KP Abstract Chaotic analysis is a relatively novel area in the study of physiological signals. Chaotic features of electroencephalogram have been analyzed in various disease states like epilepsy, Alzheimer's disease, sleep disorders, and depression. All these diseases have primary involvement of the brain. Our study examines the chaotic parameters in metabolic encephalopathy, where the brain functions are involved secondary to a metabolic disturbance. Our analysis clearly showed significant lower values for chaotic parameters, correlation dimensi...
Source: Neurology Research International - Category: Neurology Tags: Neurol Res Int Source Type: research
Authors: Heidt S, Claas FHJ Abstract INTRODUCTION: Highly sensitized patients awaiting a kidney transplant accrue on the transplant waiting list. The breadth of HLA antibodies in this subpopulation of patients precludes receiving a compatible organ offer through regular allocation within an acceptable time-frame. Areas covered: Several alternative options to receive a transplant exist for these patients, including additional priority in regular allocation, special programs based on allocation through acceptable antigens, kidney paired donation programs, desensitization protocols, or a combination of the latter two....
Source: Expert Review of Clinical Immunology - Category: Allergy & Immunology Tags: Expert Rev Clin Immunol Source Type: research
Authors: Malyszko J, Dryl-Rydzynska T, Marcinkowski W, Prystacki T, Malyszko JS PMID: 30002713 [PubMed]
Source: Archives of Medical Science - Category: General Medicine Tags: Arch Med Sci Source Type: research
Conclusions: Prevalence of epilepsy appears to be correlated with socioeconomic status in the lower socioeconomic groups. Also demographic characteristics, socio-economic factors and clinical presentation are linked to different QOL of these patients among nations. The educational program has a beneficial effect on self-management behaviors in patients with epilepsy. More work needs to be done to improve tools that help to evaluate efficiently the health-related quality of life of people with epilepsy. PMID: 30002687 [PubMed]
Source: Archives of Medical Science - Category: General Medicine Tags: Arch Med Sci Source Type: research
Angiotensin II (Ang II) infusion promotes the development of aortic aneurysms and accelerates atherosclerosis in ApoE −/− mice. In order to elucidate the role of hematopoietic cells in these pathologies, irradiation and bone marrow transplantation (BMT) are commonly utilized. The aim of this study was to investigate the effects of irradiation and BMT on abdominal and thoracic aortic aneurysm formation and acute leukocyte recruitment in the aortic root and descending aorta, an experimental mouse model of aortic aneurysm formation.
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Donor-specific antibodies (DSA) of the IgG isotype are routinely measured for diagnostic purposes in renal transplant recipients and are associated with antibody-mediated rejection and long-term graft loss.
Source: Journal of Allergy and Clinical Immunology - Category: Allergy & Immunology Authors: Source Type: research
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