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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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Health ministers call on company to lower price of cystic fibrosis drug Orkambi so the NHS can afford it.
Source: BBC News | Health | UK Edition - Category: Consumer Health News Source Type: news
CONCLUSIONS: Accidental rectus muscle disinsertion after pterygium excision surgery is a serious but rare postoperative complication of pterygium surgery. Great care should be taken intraoperatively to avoid this complication. Reattachment of the disinserted medial rectus will produce a satisfactory resolution of the problem. PMID: 29672190 [PubMed - as supplied by publisher]
Source: Strabismus - Category: Research Tags: Strabismus Source Type: research
Authors: Kwak KA, Cho HJ, Yang JY, Park YS Abstract Liver cirrhosis is a major cause of mortality and a common end of various progressive liver diseases. Since the effective treatment is currently limited to liver transplantation, stem cell-based therapy as an alternative has attracted interest due to promising results from preclinical and clinical studies. However, there is still much to be understood regarding the precise mechanisms of action. A number of stem cells from different origins have been employed for hepatic regeneration with different degrees of success. The present review presents a synopsis of stem ...
Source: Canadian Journal of Gastroenterology - Category: Gastroenterology Tags: Can J Gastroenterol Hepatol Source Type: research
Authors: Herta J, Dorfer C Abstract The goal of any epilepsy surgery is to improve patient ́s quality of life by achieving seizure freedom or by reducing the frequency of severely debilitating seizures. To achieve this goal, non-invasive and invasive diagnostic methods must precisely delineate the epileptogenic zone (EZ), which is defined as the area that needs to be resected to obtain seizure freedom. At the same time, the correct identification of eloquent brain areas is inevitable to avoid new neurological deficits from surgery. In recent years, the technical advances in diagnostics have enabled us to achieve t...
Source: Journal of Neurosurgical Sciences - Category: Neurosurgery Tags: J Neurosurg Sci Source Type: research
Authors: Kapellos TS, Bassler K, Aschenbrenner AC, Fujii W, Schultze JL Abstract Chronic obstructive pulmonary disease (COPD) is a diverse respiratory disease characterised by bronchiolitis, small airway obstruction, and emphysema. Innate immune cells play a pivotal role in the disease's progression, and in particular, lung macrophages exploit their prevalence and strategic localisation to orchestrate immune responses. To date, alveolar and interstitial resident macrophages as well as blood monocytes have been described in the lungs of patients with COPD contributing to disease pathology by changes in their functio...
Source: Journal of Immunology Research - Category: Allergy & Immunology Tags: J Immunol Res Source Type: research
We report a rare occurrence of incisional hernia attributable to internal wound dehiscence after PD catheter placement in a patient on sirolimus.A 34-year-old Latino American man was started on PD training 4 weeks after placement of a PD catheter. Soon after completing training, he developed a large soft bulge close to the PD catheter, with expansile cough impulse suggestive of an incisional hernia filled with peritoneal dialysate. The size of the bulge would decrease after the dialysate was drained. No external leak of dialysate was evident along the exit site.Because of the size of the hernia and the history of it fillin...
Source: Advances in Peritoneal Dialysis. Conference on Peritoneal Dialysis - Category: Urology & Nephrology Tags: Adv Perit Dial Source Type: research
Publication date: Available online 20 April 2018 Source:Epilepsy & Behavior Case Reports Author(s): Dobrinko Socanski, Nebojsa Jovic, Harald Beneventi, Anita Herigstad
Source: Epilepsy and Behavior Case Reports - Category: Neurology Source Type: research
Publication date: Available online 18 April 2018 Source:Epilepsy & Behavior Case Reports Author(s): Nikolai Gil D. Reyes, Mario B. Prado, Christian Wilson R. Turalde, Marc Laurence L. Fernandez
Source: Epilepsy and Behavior Case Reports - Category: Neurology Source Type: research
Publication date: Available online 18 April 2018 Source:Epilepsy & Behavior Case Reports Author(s): Robert Fisher, Jing Zhou, Adam Fogarty, Aditya Joshi, Matthew Markert, Gayle K. Deutsch, Mariel Velez We demonstrate feasibility of using high-density EEG to map a neocortical seizure focus in conjunction with delivery of magnetic therapy. Our patient had refractory seizures affecting the left leg. A five-day course of placebo stimulation followed a month later by active rTMS was directed to the mapped seizure dipole. Active rTMS resulted in reduced EEG spiking, and shortening of seizure duration compared to placebo. Se...
Source: Epilepsy and Behavior Case Reports - Category: Neurology Source Type: research
We report a 19-year-old male with recurrent seizures that developed during daily Kratom abuse as a self-treatment for anxiety. Following recurrent focal impaired awareness seizures in addition to generalized tonic–clonic seizures, he was begun on anti-seizure drugs. Seizures subsided after completing rehabilitation. Brain MRI at 29months revealed bilaterally symmetric T1-hyperintensity in globus pallidus, subthalamic nuclei, and cerebral peduncles. Our case suggests Kratom abuse may be associated with structural brain lesions on MRI and symptomatic focal epilepsy.
Source: Epilepsy and Behavior Case Reports - Category: Neurology Source Type: research
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