In their own words: Six families share the impact of organ donation

This is the season for gratitude and giving, a time to celebrate friends, family, the end of one year and the beginning of a new one. But for a select group, it also is a time to celebrate one of the greatest gifts — the gift of life through organ donation. Mickey was born with a unique combination of congenital heart defects and spent most of his early life at Boston Children’s. He was one day shy of 6 months old when he received his heart transplant, and his family is grateful for every day since. “Mickey has shown us what courage and resiliency look like, and his transplant has taught us the true meaning of giving. He has touched so many lives and because of him, we have met so many amazing children and families, whose hearts and hopes far surpass their diagnoses.” Laura received her liver transplant shortly after being diagnosed with biliary atresia. Though her family doesn’t know who her donor was, they do know it was a child around that same age and are so grateful that parents could open their hearts to save a stranger’s child in a time of grieving. She is fortunate to have encountered minimal complications post transplant, and her sister has been inspired to study medicine and one day become a doctor. “We always talked about being organ donors before Laura’s transplant, but now we’re advocates. You look at things differently when your own child is sick, and you learn to appreciate every little moment, becau...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: Diseases & Conditions Our Patients’ Stories double lung transplant heart transplant hepatoblastoma kidney transplant Liver transplant multivisceral transplant Pediatric Transplant Center (PTC) Source Type: news

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Abstract Although limb –girdle muscular dystrophies (LGMD) can cause permanent disability, to date there are no studies that examined quality of life (QoL) in these patients. Our aim was to evaluate QoL in patients with LGMD, and to identify the most significant predictors of QoL. The study comprised 46 patients with di agnosis of limb–girdle muscular weakness. QoL in patients was evaluated using two scales—SF-36 questionnaire and the Individualized Neuromuscular Quality of Life questionnaire (INQoL). Following scales were also applied: Epworth Sleepiness Scale (ESS), Hamilton Scale for Depression (HamD...
Source: Acta Neurologica Belgica - Category: Neurology Source Type: research
Conclusions: This is the first comprehensive report of patients with GSD-III in Iran with 2 uncommon clinical presentations and 5 novel mutations in the AGL gene.
Source: Journal of Clinical Neuromuscular Disease - Category: Neurology Tags: Original Article Source Type: research
Abstract The purpose of this meta-analysis was to summarize single-case intervention studies in which Functional Communication Training (FCT) involving augmentative and alternative communication (AAC) was implemented in school settings. Overall, the findings suggest that FCT involving AAC was effective in reducing challenging behaviour and promoting aided or unaided AAC use among participants with disability. FCT was more effective for the participants who engaged in less severe forms of challenging behaviour prior to intervention. Additionally, FCT was more effective when informed by a descriptive functional beha...
Source: Augmentative and Alternative Communication - Category: Speech-Language Pathology Authors: Tags: Augment Altern Commun Source Type: research
ro RC Abstract The aim of the present study was to evaluate messenger RNA expression in kidney allograft recipients. Forty-four kidney transplant recipients were evaluated up to three months after grafting. After transplantation, peripheral blood samples were drawn sequentially for real-time polymerase chain reaction analyses of perforin and TIM-3 genes. Biopsies were obtained to evaluate acute graft dysfunction and interpreted according to the Banff classification. Eight patients presented episodes of acute rejection. Recipients with rejection had significantly higher levels of TIM-3 mRNA transcripts compared to ...
Source: Braz J Med Biol Res - Category: Research Authors: Tags: Braz J Med Biol Res Source Type: research
Abstract Chronic kidney disease affects approximately 10% of the world's adult population: it is within the top 20 causes of death worldwide, and its impact on patients and their families can be devastating. World Kidney Day and International Women's Day in 2018 coincide, thus offering an opportunity to reflect on the importance of women's health and specifically women's kidney health on the community and the next generations, as well as to strive to be more curious about the unique aspects of kidney disease in women so that we may apply those learnings more broadly. Girls and women, who make up approximately 50% ...
Source: Braz J Med Biol Res - Category: Research Authors: Tags: Braz J Med Biol Res Source Type: research
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Source: Pharmacology and Therapeutics - Category: Drugs & Pharmacology Source Type: research
ConclusionsThese findings suggest that young girls with galactosemia maintain follicles in early childhood and fertility cryopreservation may be considered an option in this patient group. The pathophysiology of galactosemia leading to an accelerated follicle loss is unknown and it is currently unknown to what extent transplanted ovarian tissue can sustain fertility in adult life.
Source: Journal of Assisted Reproduction and Genetics - Category: Reproduction Medicine Source Type: research
Publication date: June 2018 Source:The Journal of Steroid Biochemistry and Molecular Biology, Volume 180 Author(s): Andreia Bettencourt, Daniela Boleixa, Henrique Reguengo, Raquel Samões, Ernestina Santos, José Carlos Oliveira, Berta Silva, Paulo Pinho Costa, Ana Martins da Silva Increasing evidence has shown that individuals with Multiple Sclerosis (MS) have lower 25-hydroxyvitamin D [25(OH)D] levels compared to healthy controls. There is no information regarding 25(OH)D levels and MS in Portugal. Therefore the aim of the current study was to examine the levels of 25(OH)D in a group of patients with MS and ...
Source: The Journal of Steroid Biochemistry and Molecular Biology - Category: Biochemistry Source Type: research
PMID: 29784177 [PubMed - in process]
Source: Canadian Journal of Ophthalmology - Category: Opthalmology Authors: Tags: Can J Ophthalmol Source Type: research
CONCLUSIONS: A literature review regarding the predictive value of routine culturing reveals conflicting data. Our findings suggest that differences in the microbiology protocols directly influence the rates of positive rim cultures. Without a standardized protocol, it is not possible to evaluate the predictive value of routine corneal rim culturing in predicting postkeratoplasty endophthalmitis. PMID: 29784165 [PubMed - in process]
Source: Canadian Journal of Ophthalmology - Category: Opthalmology Authors: Tags: Can J Ophthalmol Source Type: research
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