From PKDCure.org, The PKD Foundation
Written Testimonies Needed for FDA Advisory Committee Review of Tolvaptan
On August 5, the Food and Drug Administration (FDA) Advisory Committee for Cardiovascular and Renal Drugs will be holding a special meeting to discuss the new drug application for tolvaptan as a potential treatment for ADPKD. At this meeting, in addition to testimony from researchers and clinicians, the committee will also hear presentations from the public. The PKD Foundation has submitted the names of several individuals who can speak about the burden of having PKD and the impact on generation after generation of families. They will also be testifying that a pharmaceutical treatment option is long overdue, and that dialysis and transplantation shouldn’t be the only options for people with ADPKD.
You too can make an impact by submitting your story in writing! The FDA will be accepting written testimonies through Monday, July 22. To testify to the committee in writing, please send your submission describing the burden PKD has placed on you and your family to the contact below. If you’ve had a difficult experience with dialysis or transplantation, please share your story to help reinforce the point that PKD patients need treatment options to prevent dialysis and transplantation.
Contact Information:
Kristina A. Toliver, PharmD
Center for Drug Evaluation and Research
Food and Drug Administration
10903 New Hampshire Avenue
WO31-2417
Silver Spring, Maryland 20993-0002
Telephone: (301) 796-9001
Fax: (301) 847-8533
Email: CRDAC@fda.hhs.gov
This committee will review all testimonies and make a recommendation to the FDA, who will make a final decision about tolvaptan. The FDA’s goal is to have a decision by September 1. [Read more]
PKD Foundation Looking for CEO
Chief Executive Officer - Polycystic Kidney Disease Foundation
The Polycystic Kidney Disease Foundation (PKD Foundation) is seeking a dynamic Chief Executive Officer to build on our exceptional record of over 30 years of quality and committed service in promoting research, advocacy, education, support and awareness to discover treatments and a cure for polycystic kidney disease. [Read more]
Making the Gift of Life
From Ipswich Advertiser, Queensland Australia
Dad donates kidney to his baby girl
WHEN Judy Lonie fell pregnant, she and her husband James Lonie were excited by the thought of welcoming their first child.
But the first 18 months of their daughter Heidi's life have not played out as they expected, with a serious kidney condition keeping her in hospital more than she's been home.
Now James is preparing to make the ultimate act of love - donating a kidney to his baby girl.
Heidi was born four weeks' premature and diagnosed with polycystic kidney disease, autosomal recessive.
Her enlarged kidneys were covered in microscopic cysts. The kidneys were getting bigger every day and eventually grew to be larger than a normal adult kidney.
Heidi had both her kidneys removed six weeks ago and the family is waiting for life-changing surgery when James donates one of his kidneys to his baby girl.
The youngster has spent only three weeks at home this year and five months in total since she was born. [Read more]
From Tulsa World, Oklahoma
Wilma Mankiller taught her daughter that being angry about a health problem won't fix it.
Now Gina Olaya, who has the same hereditary kidney disease as her mother, a former Cherokee Nation principal chief, is determined to move on and work to be as healthy as possible.
She had dramatic help in the form of a donor kidney from her sister, Felicia Olaya.
Felicia Olaya never second-guessed her decision to donate a kidney, so long as she was able.
"I just made up my mind," she said. "If I'm healthy and it's God's will, I will be the donor."
Gina Olaya was diagnosed with polycystic kidney disease in 2006. She knew it well. In addition to her mother, several of her mother's 11 siblings had the disease.
It has affected some of her cousins and at least one child in the generation below her.
She tried to do peritoneal dialysis, which is done at home, but had continuous problems with her port and was never able to complete a cycle. [Read more]
Now Gina Olaya, who has the same hereditary kidney disease as her mother, a former Cherokee Nation principal chief, is determined to move on and work to be as healthy as possible.
She had dramatic help in the form of a donor kidney from her sister, Felicia Olaya.
Felicia Olaya never second-guessed her decision to donate a kidney, so long as she was able.
"I just made up my mind," she said. "If I'm healthy and it's God's will, I will be the donor."
Gina Olaya was diagnosed with polycystic kidney disease in 2006. She knew it well. In addition to her mother, several of her mother's 11 siblings had the disease.
It has affected some of her cousins and at least one child in the generation below her.
She tried to do peritoneal dialysis, which is done at home, but had continuous problems with her port and was never able to complete a cycle. [Read more]
Living With PKD
From Recombine.com
Polycystic Kidney Disease AwarenessPolycystic Kidney Disease (PKD) is a serious genetic condition that affects millions of people worldwide, and yet many people have never heard of this disease. June 17th through June 23rd marked PKD Awareness Week. Although this week has passed, many events are still going on nationwide to help raise awareness about PKD.
What is Polycystic Kidney Disease?
Polycystic Kidney Disease (PKD) is a genetic disorder that causes affected individuals to have clusters of cysts (fluid-filled sacs) in the kidneys. These cysts can also develop in other parts of the body, particularly the liver. The accumulation of these cysts interferes with the kidneys’ ability to function and affected individuals can eventually develop kidney failure...
Where can PKD patients find support?
Check out PKDCure, which offers support groups; has information about current research for curing PKD, political advocacy, and treatments and trials available for PKD patients; and hosts marathons, concerts, picnics, and fundraisers for raising awareness about and finding a cure for the disease.
Share your story at PDK Will Not Beat Me. Created by a PKD patient, Valen Keefer, the website provides a virtual support network for PKD patients–“to share stories, to ask questions and to make life-long friendships.”
What PKD events are in my area?
Each year, PKDCure hosts 2 national events around the United States: Walk for PKD and Run for PKD–each hosted by local chapters of the organization. [Read more]
Check out PKDCure, which offers support groups; has information about current research for curing PKD, political advocacy, and treatments and trials available for PKD patients; and hosts marathons, concerts, picnics, and fundraisers for raising awareness about and finding a cure for the disease.
Share your story at PDK Will Not Beat Me. Created by a PKD patient, Valen Keefer, the website provides a virtual support network for PKD patients–“to share stories, to ask questions and to make life-long friendships.”
What PKD events are in my area?
Each year, PKDCure hosts 2 national events around the United States: Walk for PKD and Run for PKD–each hosted by local chapters of the organization. [Read more]
From Senojeiram.wordpress.com, a blog
... Here’s another one that you should probably get all the facts on, first. PKD causes high blood pressure. I’ll say that again – PKD causes high blood pressure. Severity varies from case to case, but the very simple answer is our bodies are producing renin at a higher rate, and because function is impaired, it’s not getting flushed out. Renin is a hormone that is involved in controlling blood pressure and sodium and water in the body. Too much renin in the system will lead to hypertension. Untreated, mine is stroke-risk high. {Read more]
From ExperienceProject.com, by Megan85
I Have Polycystic Kidney Disease - Ticking Time-Bombs
I was diagnosed six years ago at age 22, completely by accident. My father passed away at age 43 from ADPKD, three weeks before I left for basic training. Since MEPS did not find anything and I had never experienced any medical issues, I mistakenly thought that I must not have inherited the condition. Wrong. Since then, I have track marks in my inner-elbow from IV's, blood draws, ect. I experience low-level flank pain most days, and I've had my share of kidney stones, UTI's, blood in my urine, etc. [Read more]
When the cysts enlarge to a certain size, they become very likely to rupture.What are the cyst rupture symptoms in PKD?
Blood in urine
Blood in urine is commonly seen in cyst rupture in PKD.It can be microscopic or gross hematuria. Microscopic hematuria can not be detected with naked eyes, but gross hematuria can. The blood in urine usually lasts for about a week or several days.
Back pain
Patients with PKD can usually can experience mild back pain.However,if cysts rupture,the pain will become extremely intense. Usually, painkillers are prescribed to control the pain. However, if the patients have serious kidney damage, pain killers should be avoided.
Serious signs
Cyst rupture in PKD may cause very serious signs and symptoms which would need immediate medical attention.Sepsis and hemorrhage are very serious and even life-threatening conditions.If sepsis is not controlled,it may cause failure of other organs. [Read more]
Blood in urine
Blood in urine is commonly seen in cyst rupture in PKD.It can be microscopic or gross hematuria. Microscopic hematuria can not be detected with naked eyes, but gross hematuria can. The blood in urine usually lasts for about a week or several days.
Back pain
Patients with PKD can usually can experience mild back pain.However,if cysts rupture,the pain will become extremely intense. Usually, painkillers are prescribed to control the pain. However, if the patients have serious kidney damage, pain killers should be avoided.
Serious signs
Cyst rupture in PKD may cause very serious signs and symptoms which would need immediate medical attention.Sepsis and hemorrhage are very serious and even life-threatening conditions.If sepsis is not controlled,it may cause failure of other organs. [Read more]
From KidneyServiceChina.com
Polycystic Kidneys: Causes of Blood in UrineAbout 50% of sufferers have symptom of blood in urine (hematuria). What are the causes of this problem?
* Rupture of kidney cyst
Blood in urine is the most commonly reported sign of ruptured cysts within the kidney. In case of PKD, the kidneys cysts will become enlarged in size gradually, causing suppression to the kidney and surrounding organs. This may lead to big cyst bursting. Since there are lots of capillaries on the cyst wall, when the cyst ruptures, the red blood cells will enter into the urinary tract and eventually be removed into urine.
* Damage of the kidneys' filtering function
With gradually enlarged cysts in the kidneys, the healthy renal tissues will be damaged, and kidney function may deteriorate. When the filtering units of the kidneys (glomeruli) are impaired, red blood cells will get leaked into the urine, causing Hematuria.
* Kidney stone or UTIs
Both of kidney stone and UTIs are common complications of Polycystic Kidneys. These complications can result in blood in the urine. [Read more]
From DailyStrength.org,
Polycystic Kidney Disease (PKD) Support Group
Hello everyone!
I'm new to this group, but I was diagnosed with PKD at age 24, almost 5 years ago. It was found by accident after a UTI turned into a bladder infection and was misdiagnosed as a UTI. I was prescribed the wrong antibiotics and the bladder infection went to my kidneys and into my bloodstream, which nearly killed me. I had a fever of 107 for three days. [Read more]
I'm new to this group, but I was diagnosed with PKD at age 24, almost 5 years ago. It was found by accident after a UTI turned into a bladder infection and was misdiagnosed as a UTI. I was prescribed the wrong antibiotics and the bladder infection went to my kidneys and into my bloodstream, which nearly killed me. I had a fever of 107 for three days. [Read more]
From AllAboutKidneys.com,
This is a review of polycystic kidney disease for medical students in their clinical years and others learning clinical medicine.
(July 15, 2013)—Results from the Fox Chase study could eventually lead to the first treatment for autosomal dominant polycystic kidney disease (ADPKD)—a life-threatening and debilitating condition, and the most common inherited kidney disease. A new compound reduces the symptoms of ADPKD in a mouse model, according to research from Fox Chase Cancer Center that will appear in the July 15, 2013 issue of the Proceedings of the National Academy of Sciences.
ADPKD affects between one in 400-1,000 people, making it one of the most commonly inherited life-threatening diseases. Along with cysts, ADPKD can cause the kidneys to swell to the point where they become visible to others, and patients experience abdominal or flank pain. Other complications include blood in the urine and infections of the cysts.
Half of patients develop kidney failure, typically around their fifth or sixth decade, requiring a transplant or dialysis for the rest of their lives. Many also are at increased risk of additional problems, such as high blood pressure, cardiac disease or brain vessel abnormalities.
After administering a new experimental compound once weekly for 10 weeks to mice bred to develop ADPKD, the researchers saw fewer signs of disease, including the tell-tale kidney cysts and enlarged kidneys. In mice with previously established ADPKD, the cysts progressed more slowly during the treatment. Importantly, kidney function also appeared to improve. [Read more]
From Mayo Clinic Discussions
Drinking [alcohol] with pkd
Question posted. No response as of this date.
Traditional Chinese Medicine and PKD
From eshine-Kidney.blogspot.com
Polycystic kidney health rehabilitation exercise can help
... Life is movement, polycystic kidney disease patients and healthy people are different, exercise should note the following:
1, daily activities, work for polycystic kidney disease patients is concerned, how can we not affect the body, which, experts suggest that the patient's condition according to the specific circumstances to develop, vary.
2, a single cyst size of 40 mm or less in patients generally do not have any major disruption, this time most of the patients with cystic although there have been slight mutual pressure, but the pressure between the cyst is not particularly large, relatively high for some security the movement is still possible, but can not participate in some of the collision of sports, such as playing basketball. Some of the usual gentle exercise will not affect the kidneys.
This way, sport health attention, treatment and care can really play a positive role. Therefore, in patients with polycystic kidney disease everyday life must be more movement, with medical treatment, to let the disease faster and better recovery. [Read more]
1, daily activities, work for polycystic kidney disease patients is concerned, how can we not affect the body, which, experts suggest that the patient's condition according to the specific circumstances to develop, vary.
2, a single cyst size of 40 mm or less in patients generally do not have any major disruption, this time most of the patients with cystic although there have been slight mutual pressure, but the pressure between the cyst is not particularly large, relatively high for some security the movement is still possible, but can not participate in some of the collision of sports, such as playing basketball. Some of the usual gentle exercise will not affect the kidneys.
This way, sport health attention, treatment and care can really play a positive role. Therefore, in patients with polycystic kidney disease everyday life must be more movement, with medical treatment, to let the disease faster and better recovery. [Read more]
From SparkPeople.com
Polycystic Kidney Disease And Lose Weight
Variety of treatment of renal cysts,renal cysts how to treat usually practice traditional Chinese medicine approach, the effect issignificant. When the micro-based medicine to penetrate the treatment of single renal cysts,belong to the disease outside the rule. The therapeutic mechanism of this renal cysts treatment:the expansion on the wall of blood vessels, accelerating the wall of blood circulation, renal cystHow therapy to promote the increase in wall permeability, prompting the pressure drop in thewall of blood vessels, reversed due to vascular internal pressure higher than the intracapsular pressure, differential pressure, and accelerate the cyst fluid of water to the blood vessels back to the absorption system in the continued secretion of the cyst wall epithelial cells, renal cystshow treatment to prevent the continuation of the wall of blood vessels and cysts increases. [Read more dialog between patient and expert]
PKD Research
From Fox Chase Cancer Center, PHILADELPHIA, PA
(July 15, 2013)—Results from the Fox Chase study could eventually lead to the first treatment for autosomal dominant polycystic kidney disease (ADPKD)—a life-threatening and debilitating condition, and the most common inherited kidney disease. A new compound reduces the symptoms of ADPKD in a mouse model, according to research from Fox Chase Cancer Center that will appear in the July 15, 2013 issue of the Proceedings of the National Academy of Sciences.
ADPKD affects between one in 400-1,000 people, making it one of the most commonly inherited life-threatening diseases. Along with cysts, ADPKD can cause the kidneys to swell to the point where they become visible to others, and patients experience abdominal or flank pain. Other complications include blood in the urine and infections of the cysts.
Half of patients develop kidney failure, typically around their fifth or sixth decade, requiring a transplant or dialysis for the rest of their lives. Many also are at increased risk of additional problems, such as high blood pressure, cardiac disease or brain vessel abnormalities.
After administering a new experimental compound once weekly for 10 weeks to mice bred to develop ADPKD, the researchers saw fewer signs of disease, including the tell-tale kidney cysts and enlarged kidneys. In mice with previously established ADPKD, the cysts progressed more slowly during the treatment. Importantly, kidney function also appeared to improve. [Read more]
From ScienceCodex.com
... Xiaogang Li and colleagues at the University of Kansas Medical Centr used a mouse model of ADPKD to explore the role of the protein sirtuin 1 in cyst formation.
They found that inhibition of sirtuin 1 activity using vitamin B3 can reduced cyst formation in the kidneys of ADPKD mice. These findings suggest that therapeutics targeting sirtuin 1 could potentially be used to treat ADPKD. [Read more]
They found that inhibition of sirtuin 1 activity using vitamin B3 can reduced cyst formation in the kidneys of ADPKD mice. These findings suggest that therapeutics targeting sirtuin 1 could potentially be used to treat ADPKD. [Read more]
From Journal of Lipid Research
MALDI imaging MS reveals candidate lipid markers of polycystic kidney disease
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