From Lancashire Evening Post, United Kingdom
Lorraine determined to help others get gift of life
The 53-year-old has become a dedicated campaigner for renal patients and has spent much of her time this year raising awareness.
She campaigned during the British Transplant Games, spoke as part of the National Kidney Conference 2014 and has even been to Westminster with fellow patients, donors and carers.
Lorraine, of Chapel Street, Brinscall, said: “Organ donation has allowed me to have a voice this year.”
Lorraine was in renal failure due to polycystic kidney disease, a life-threatening hereditary condition that led to the death of her father, aged just 36, and other close relatives.
The condition caused so much fluid to build up in her body that Lorraine says she spent years looking as if they were pregnant.
She was given medication but in 2010, doctors told her they would have to remove one or both of her kidneys.
A kidney was removed and she had dialysis until a transplant was carried out using a kidney from her youngest sister, Melissa Wilding, on February 14, 2013.
The operation went well and Lorraine’s health improved, although she does still have the disease and complications.
Lorraine said: “Having the transplant from my sister has given me a better quality of life and it has enabled me, more than anything, to use my voice to help others in the same situation. However, my polycystic kidney disease is still there. It will always be that way.”
Exactly a year after the transplant, Lorraine held a party at Brinscall Athletics Club to celebrate the anniversary and support fund-raising appeal Kidneys For Life.
Among the guests were her family, her surgeon and friends made in hospital.
Since then, Lorraine has been committed to raising awareness of kidney disease and organ donation.
It has been a busy year for Lorraine. She raised more money for Kidneys For Life when she was involved in organising a joint fund-raiser at the Rose And Crown pub in Chorley town centre.
In July during National Transplant Week, she urged people to tell their families if they wish to become organ donors, so they would be aware when they died.
Lorraine was went to Westminster with the British Kidney Patient Association to talk to a group of MPs about organ donation and calls for an “opt out” system. [Read more]
But all of that changed in 2010.
I found myself more and more fatigued and around the same time my mother died from polycystic kidney disease (PKD), I learned I too had inherited the genetic kidney disorder. Most people with PKD, a chronic kidney disease where clusters of cysts develop primarily within the kidneys, get the disease between their 50’s and 60’s.
I was on the verge of kidney failure at 44 years of age.
Eventually doctors told me that the only cure was dialysis or a kidney transplant. At this point I had three young children and the news was debilitating. But we quickly gathered up some courage to ask for help. My brother was not a fit since he too had PKD; my husband had a different blood type. I went to the Internet to ask for a kidney. Our community rallied and my nephew-in-law was generous enough to go through a battery of tests that revealed a nearly perfect blood match.
On February 28, 2011, I had a successful kidney transplant in my native Philippines. As soon as my anesthesia wore off, I felt a light turn on–the extreme fatigue was gone. My donor and I recovered quickly and we were back on our feet within a month after surgery. Four months later, the honeymoon was over and I was back in the hospital with an mysterious infection. Many feared the worst, suspecting post-transplant lymphoma, but it turned out to be an infection caused by natural bacteria in the gut.
All of this resulted in major weight loss. I felt very weak and for the first time in my whole life, I was told to see a nutritionist so that I could gain weight efficiently. Soon, I started working out twice a week with a personal trainer. Within three months, I started feeling great, seeing changes in my body, and gaining strength. Eventually, I stopped working with a trainer and started my own daily exercise regimen. I combined weight conditioning on my own and attended group exercise classes, trying everything from pilates to yoga, bootcamp to cardio dance.
In my first year of exercising regularly, I discovered that fitness is essential to my everyday life. It kept me sane, happy and made me a better person to everyone. As life returned to normal, I made the decision not to return to work and instead focus on my family. I started attending dance classes again and began to learn Latin ballroom dances. I enjoyed ballroom dancing so much that I participated in local Pro-Am competitions. While doing this, I discovered that my normal exercise regimen wasn’t good enough–I needed to train like dancers do. I discovered “barre” conditioning classes and fell in love. This type of workout combines all the elements of exercise that I love and need for ballroom dancing- free weights, dance-based movements, core-focused exercises and stretching. I felt stronger and had the endurance to be in competition the whole day.
This experience–the transplant, the recovery, the exercise-fueled empowerment, led to my desire to help other women feel the same way. This year I started training to be a group fitness instructor and decided to open my own studio. I truly believe that no one should have to go through a life crisis to discover that exercise should be part of their life.
PKD Research
Over the last decade cilia, the tiny, bristly, hair-like structures that dot cell surfaces, have gone from relative obscurity to a position of importance for understanding multiple complex human diseases now collectively known as ciliopathies. These diseases, which are caused by abnormal or absent cilia, are now known to be at the root of a number of genetic disorders, from polycystic kidney disease to some forms of retinal degeneration.
A news article about ciliopathies published in Scientific American explains how research by George B. Witman, PhD, professor of cell & developmental biology and Gregory J. Pazour, PhD, professor of molecular medicine, led to the discovery that cilia dysfunction causes polycystic kidney disease (PKD), which affects about 12.5 million people worldwide.
From the initial discovery, numerous other links between cilia dysfunction and disease have been made. Commonly known motile cilia beat back and forth outside the cell and help regulate fluid flow. It turns out most human cells also have at least one primary or nonmotile cilium that functions more like a molecular antenna. This cilium is what detects and conveys important messages to its cell about the local environment.
“The signaling machinery is concentrated in the cilia,” Dr. Witman said. “All in this very tightly controlled constrained space.”
When cilia don’t form properly the resulting miscommunication can disrupt organ formation during development and lead to congenital disease.
Witman, who authored a separate review article published by BioScience in December, said the future may include cilia-based gene therapies that could potentially treat diseases such as retinal degeneration before it causes blindness.
Non-communicable diseases today account for nearly 70% of all deaths globally, according to the latest results from the Global Burden of Disease study, an ongoing project to measure the impact of disabling and deadly conditions across the world.
Among the major non-communicable killers such as chronic obstructive pulmonary disease, diabetes, and stroke, one of the lesser-recognized but increasingly significant causes of death is chronic kidney disease (CKD).
In 2013, nearly one million people died from CKD. While this represents less than 2% of all deaths globally, it is a 135% increase from the number of CKD-related deaths in 1990.
While the global increase in CKD-related deaths is driven in part by people living to older ages, there is no scientific consensus on what is making this increasingly prominent among younger adults, with a near doubling of CKD-related deaths among people aged 15-49 since 1990.
Probability of death from chronic kidney disease among both sexes, ages 15-49, 2013
Certain regions are more greatly affected. Central America is experiencing notable declines in life expectancy because of the rise of chronic kidney disease, which causes 6% of all deaths in this region. Some of these regional and age-based differences are even more clear in the following graphic, which shows the global probability of death from CKD among older adults (as compared to the graph above focused on those between 15-49 years old).
Probability of death from chronic kidney disease among both sexes, ages 50-74, 2013
Called out as a “forgotten non-communicable disease” by GBD collaborator Alan Lopez, this condition causes considerable disability and is fatal if untreated. The disease affects populations in many low- and middle-income countries where the expensive treatments required – dialysis and kidney transplant – are not available. [Read more]
From Nephrology News
A new study published in Clinical and Experimental Nephrology demonstrates that three urinary biomarkers, NGAL, M-CSF, and MCP-1, are potential candidates for indicating autosomal dominant polycystic kidney disease (ADPKD). Researchers from the Japanese Society of Nephrology measured 28 biomarkers in urine taken from ADPKDpatients to compare with that of healthy subjects, and performed a gene expression analysis of the kidney from DBA/2FG-pcy mice (ADPKDmodel animals) to identify prospective biomarkers. Additionally, they investigated the DBA/2FG-pcy mouse urine samples to determine the biomarkers’ efficacy. http://link.springer.com/article/10.1007/s10157-014-1078-7
The researchers reported were statistically significant differences in 12 of the 28 prospective urinary biomarkers between urine from ADPKDpatients and that from healthy subjects. Six of these matched with highly expressed gene products of DBA/sFG-pcy mouse kidneys. Among those six biomarkers, NGAL, M-CSF, and MCP-1 showed significantly higher values in the urine of DBA/2FG-pcy mice than that of wild type.
No comments:
Post a Comment