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Health and Medical Information
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Medical Understanding
Additional Articles: Here is some material in addition to the following article relating to Autism.
Additional Article 1
Additional Article 2
Autism Site
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Autism Might Slow Brain's Ability to Integrate Input from Multiple Senses
A new study found that kids with autism were slower to integrate stimuli from different senses, providing possible explanations for behavioral differences
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Children with autism often focus intently on a single activity or feature of their environment. New research might help to explain this behavioral trend, providing evidence that the brains of young people with autism are slower to integrate input coming from more than one sense at the same time. . . . More Article
(Article on DisabilityVoice, Thursday, Sept. 02, 2010)
Article Posted By Timothy A Carey
By- Scientific American- Katherine Harmon - Aug 21, 2010
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Medical Research
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Research Briefs: ALS, BMD, DMD, MMD, SMA, Muscle Regeneration
News on amyotrophic lateral sclerosis; Duchenne, Becker and myotonic muscular dystrophies; spinal muscular atrophy and muscle regeneration160;
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Research . . . More Article
(Article on DisabilityVoice, Friday, Aug 27, 2010)
Article Posted By Timothy A Carey
By- Quest - Margaret Wahl - Aug 20, 2010
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Disease Progression
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DMD Research: New Funding for Imaging Studies
Could MRI be better than muscle biopsy in measuring disease progression and therapy effectiveness in Duchenne muscular dystrophy?
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The use of magnetic resonance imaging (MRI) as an assessment tool in boys with Duchenne muscular dystrophy (DMD) is being studied by former MDA grantee Krista Vandenborne, through a $7.5 million grant from the National Institutes of Health (NIH). The goal of the study is to assess whether MRI technology can be used as a precise, noninvasive measure of muscle tissue, gauging both disease progression and the effectiveness of therapies tested in children with DMD. . . . More Article
(Article on DisabilityVoice, Monday, Aug 23, 2010)
Article Posted By Timothy A Carey
By- Quest - Amy Labbe - May 17, 2010
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Diagnoses
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Autism Breakthrough: Diagnosis in 15 minutes and 90% Accuracy
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A breakthrough happened within the autism community that will change the way that autism is diagnosed. A new technique developed at King’s College London uses a fifteen minute MRI scan to analyze the structure of grey matter in the brain. Tests have shown that the accuracy rate is 90% . . . More Article
(Article on DisabilityVoice, Sunday, Aug 22, 2010)
Article Posted By Timothy A Carey
By- AMS Vans - Amelia - Aug 20, 2010
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Wheelchair Safety Tips for a Slippery, Muddy, Steep, Crowded and Inaccessible World
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After 25 years of marriage, my husband, the man who vowed to love me forever, dumped me on Fifth Avenue in New York. I was riding in a manual wheelchair and Jim was pushing me. The light turned green and he shoved my chair into the crosswalk. In an instant, I tumbled headfirst into the intersection and landed in the street. Before the light changed, several people picked me up and plopped me back into my wheelchair. Luckily, I was uninjured, but Jim was mortified. He slowed his pace and was cautious at the deeply angled curbs. . . .
More Article
(Article on DisabilityVoice, Thursday, July 25, 2010)
Article Posted By Marilyn Zamarripa
By- Quest Magazine - July 1, 2010
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Article Staging.. Health and Medical For On News Page
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Pregnancy
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| Caution, Preparation and Teamwork Lead to the Best Pregnancy Outcomes in Women with Neuromuscular Diseases |
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When Emma Ciafaloni was preparing to become a neuromuscular disease specialist in the 1990s, and even when she directed the MDA neuromuscular disease clinic at Duke University in the early 2000s, she was struck by the lack of information she could offer patients who wanted to become pregnant.
“I really have an interest in women and neuromuscular diseases, in what we can do better for them in dealing with their neuromuscular disease and also with pregnancy,” says Ciafaloni, . . .
More Article
(Article on DisabilityVoice, Thursday, July 22, 2010)
Article Posted By Timothy A Carey
By- Quest Magazine - June 30, 2010
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| Amputee Care |
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Seven Points of Comfort
1. Hygiene –
Prosthetic users find that washing their residual limb both in the morning and at night generally works well to maintain optimal hygiene with their prosthesis. However, . . .
More Article
(Article on DisabilityVoice, Tuesday, July 20, 2010)
Article Posted By Timothy A Carey
By- Empowering Amputees - July 16, 2010 - Kevin Carroll, MS, CP, FAAOP
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| Medical Error |
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Accident took her life, his heart
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As a couple, Jack Rode and Donna Wendt made quite the visual impression.
He’s built like a bear — big belly and big personality.
She had been paralyzed from the chest down since age 7 and was so small she fit in a child’s size wheelchair.
Rode and Wendt were deeply in love for 28 years but never married. Tying the knot would have taken away her thousands of dollars a month in benefits . . .
More Article
(Article on DisabilityVoice, Tuesday, June 29, 2010)
Article Posted By Timothy A Carey
By Las Vegas Sun - June 27, 2010 - Marshall Allen
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| Drug Trial |
DV Speaks:
The article below says the trial is the first exon skipping trial in the us. Exon-skipping has been tested before in the us. Just not with the same type of human subjects. |
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First U.S. Exon-Skipping Trial Opens
A study of exon-skipping drug GSK2402968 in nonambulatory subjects with DMD has opened At Nationwide Children's Hospital in Ohio
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A study of an experimental "exon-skipping" compound called GSK2402968 — designed to treat people with Duchenne muscular dystrophy (DMD) caused by any of a specific set of genetic mutations — is now open at Nationwide Children's Hospital in Columbus, Ohio. . . . More Article
(Article on DisabilityVoice, Saturday, June 19, 2010)
Article Posted By Timothy A Carey
By Quest Magazine- June 18, 2010 - Amy Labbe
::: View The Entire Article ::: ::: |
| Bad Healthcare |
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Warning to Britain as almost half of Belgium's euthanasia nurses admit to killing without consent
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A high proportion of deaths classed as euthanasia in Belgium involved patients who did not ask for their lives to be ended, a study found.
More than 100 nurses admitted to researchers that they had taken part in 'terminations without request or consent'. . . More Article
(Article on DisabilityVoice, Saturday, June 12, 2010)
Article Posted By Timothy A Carey
By Mail Online - June 10, 2010 - Simon Caldwell
::: View The Entire Article ::: ::: |
HopeWorks Community - Voices of Recovery
VOICES OF RECOVERY: Will Meecham |
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Recovery from severe depression
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This is my story of recovery from severe depression. My message is one of hope. On the one hand, I doubt many people have experienced longer lasting or more severe depression than me (though a multitude have it just as bad). On the other, I have found my way to a place of contentment and steadiness that I never dreamt possible. Although depression has dogged me for most of my adult life, my mood reached new lows after I lost my surgical career to severe arthritis in my neck. My spirits were especially crushed because the loss of occupation brought up lingering self-doubts left over from a highly traumatic childhood. More Article
(Article on DisabilityVoice, Tuesday, Mar. 22, 2010)
Article Posted By Marilyn Zamarripa
By hopeworkscommunity -March 22, 2010
::: View The Entire Article ::: |
Medical Research
DMD/BMD Research: Ataluren Results Disappointing |
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The experimental drug ataluren ... did not meet its primary end point.
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The biopharmaceutical firm PTC Therapeutics announced March 3 that ataluren, its experimental drug for certain forms of Duchenne (DMD) and Becker (BMD) muscular dystrophy, although safe and well tolerated, failed to meet its primary end point within the 48-week duration of the phase 2b trial. That end point was an improvement in how far boys with DMD or BMD could walk in six minutes. More Article
(Article on DisabilityVoice, Tuesday, Mar. 10, 2010)
Article Posted By Marilyn Zamarripa
By Quest Magazine- Staff -March 3, 2010
::: View The Entire Article ::: |
Medicine in Entertainment
Heroes, Hope & Hollywood |
| How a father led a quest to discover a treatment for his critically ill children, and ended up the subject of a major motion picture |
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Most anybody who hears John Crowley’s story will will call him a hero.
It’s a logical label for a man who led a quest to develop a treatment to stop the disease killing two of his young children.
The Crowley family’s incredible story has been chronicled in the media, a book and now a major Hollywood feature film. “Extraordinary Measures” . . . More Article
(Article on DisabilityVoice, Trusday, Feb. 04, 2010)
Article Posted By Timothy A Carey
By Quest Magazine- Tara Wood -Dec 31, 2009
::: View The Entire Article ::: |
Health Care
Judge: Medical Care for Baby Isaiah Can Continue
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Disabilityvoice Speaks: I think this article is very interesting and brings up many questions. Is this how people with disabilities will be treated when and if we have Universal Healthcare? They are trying to terminate the life of a child despite objections from both parents. This is supposedly because the child's life will not be worth anything. How can anyone say whose life is worthwhile? I have Muscular Dystrophy. Will they someday say children born with Muscular Dystrophy will not have a worthwhile life?
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A Canadian judge has ruled A Canadian judge has ruled that baby Isaiah James May's life support can continue for now while the lawyers re-explore what has turned into a controversial case of possible euthanasia. . . More Article
(Article on DisabilityVoice, Friday , Jan. 29, 2010)
Article Posted By Timothy A Carey
By CBN- Jan. 28, 2010
::: View The Entire Article ::: |
Medical Care
New Contract for Incontinence and Selected Urological Supplies for Certain BadgerCare Plus and Medicaid Members
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Wisconsin- has decided to go with one provider for Incontinence and Urological products for certain badgerCare Plus and Medicaid Members. Members will be required to go through J&B Medical Supply out of Michigan. Members will no longer be able to receive urological supplies (such as catheters, drainage bags, or lubricant) or incontinence supplies (such as diapers, pull-ons, and pullups) through their current providers. Please refer to the following document for more detailed information.
Go to: Info Document
J&B Medical Supply Website
(Article on DisabilityVoice, Thursday, Jan. 14, 2010)
Article Posted By Timothy A Carey
By Department of Health Services
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Medicine
Exon Skipping Drug Delivers Again
Early results show that when AVI4658 is delivered system-wide through the bloodstreams of boys with DMD, it’s safe and increases dystrophin production. |
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Interim results from a human clinical trial of the exon-skipping compound AVI4658 in boys with Duchenne muscular dystrophy (DMD) show that when the compound is delivered to the whole body via the bloodstream. . . More Article
(Article on DisabilityVoice, Monday, Jan. 11, 2010)
Article Posted By Timothy A Carey
By Margaret Wahl- Quest Magazine- Dec. 23, 2009
::: View The Entire Article ::: |
Medicine
New DMD Care Recommendations
After a year of planning, new recommendations for physicians caring for DMD patients have been released |
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A comprehensive Set of clinical care recommendations for the diagnosis and management of Duchenne muscular dystrophy (DMD) is now available to medical professionals and families.
The complete recommendations, . . . More Article
(Article on DisabilityVoice, Monday, Jan. 11, 2010)
Article Posted By Timothy A Carey
By Amy Labbe- Quest Magazine- Dec. 03, 2009
::: View The Entire Article ::: |
Medicine
Stem Cell Based Treatment For Spinal Muscular Atrophy Receives Orphan Drug Designation. |
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California Stem Cell, Inc And Families Of Spinal Muscular Atrophy Reach Significant Milestone In Development Of Motor Neuron Treatment For SMA
IRVINE, Calif. (December 8, 2009) – California Stem Cell, Inc. (CSC) and Families of Spinal Muscular Atrophy (FSMA) announced today that the FDA has granted orphan drug designation to MOTORGRAFTTM, a stem cell-derived motor neuron product, for the treatment of Spinal Muscular Atrophy (SMA).
Orphan drug designation, granted by the FDA Office of Orphan Products Development, provides several incentives to companies in the private sector developing novel drugs or biologics to treat diseases with relatively small market potential. . . . More Article
(Article on DisabilityVoice, Monday, Dec. 21, 2009)
Article Posted By Timothy A Carey
By Family's of Spinal Muscular Atrophy- Dec. 08, 2009
::: View The Entire Article ::: |
Health
Heart Disease Myths |
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MADISON, WI - Think you know about your heart? Your doctor may disagree. Cardiovascular medicine faculty at the University of Wisconsin School of Medicine and Public Health say they've heard plenty of myths about heart disease - and patients who believe them may be at increased risk because of the misinformation.
To shine some truth on the subject, these cardiologists have provided a quick list of some of the most common myths . . . . More Article
(Article on DisabilityVoice, Sunday, Dec. 13, 2009)
Article Posted By Timothy A Carey
By UW Health -Nov. 06, 2009
::: View The Entire Article ::: |
Homecare
State agency tables pay cuts to independent private duty nurses
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DisabilityVoice Speaks: Timothy A Carey of DisabilityVoice (Appleton, Wisconsin) has been watching this proposed cuts closely. He has Duchenne Muscular Dystrophy and is on a ventilator for Respiratory Life Support. Some of his care comes through private duty nursing. A big concern is that a lack of nurses could cause others who have only private duty nursing for their care. If they cannot find nurses and are forced into institutions then the cuts would actually cost the state of Wisconsin more money.
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The state Department of Health Services has tabled two proposed pay cuts to independent private duty nurses, who provide in-home care for severely disabled patients, many of whom rely on ventilators to breathe.
The move comes after a Wisconsin State Journal article about the cuts and complaints from patients, nurses and legislators, said Fran Meyer, president of Professional Homecare Providers, an association of the independent nurses.
About 2,200 of the nurses provide care in the homes of about 400 patients, often around the clock. . . .
Patients said the cuts would make it harder to find in-home nurses and could force them to move to nursing homes. . . . More Article
Related Links
http://host.madison.com/wsj/news/local/health_med_fit/article_8d9df7b4-ae56-56da-8620-716ef797d6ea.html
(Article on DisabilityVoice, Wednesday, Nov. 25, 2009)
Article Posted By Timothy A Carey
By DAVID WHLBERG | dwahlberg@madison.com - Nov. 23, 2009
::: View The Entire Article ::: |
Healthcare
Paying for in-home nurses
By DAVID WAHLBERG | dwahlberg@madison.com
Nurses care for Mark Doering around the clock, bathing him, feeding him, taking him to the bathroom and making sure his ventilator allows him to breathe.
Doering, 48, has muscular dystrophy and lives by himself in an apartment in Watertown. He fears . . . More Article
(Article on DisabilityVoice, Monday, Nov. 09, 2009)
Article Posted By Timothy A Carey
By DAVID WHLBERG | dwahlberg@madison.com Nov. 08, 2009
::: View The Entire Article ::: |
Health Research
First Human Exon Skipping Trial in U.S. Planned for 2010
The first human trial The first human trial in the United States of a treatment strategy known as "exon skipping" for Duchenne muscular dystrophy (DMD) is scheduled to begin in March 2010 at Nationwide Children's Hospital in Columbus, Ohio, one of five elite centers comprising MDA's DMD Clinical Research Network. . . . More Article
(Article on DisabilityVoice, Saturday, Nov. 07, 2009)
Article Posted By Timothy A Carey
By MDA Quest Extra- Received Nov. 03, 2009
::: View The Entire Article ::: |
Health Care
Wisconsin's new Family Care program stirs debate about how adults with disabilities will fare
APPLETON — As counties start shifting to Family Care, the state's managed long-term support system replacing county-led programs, not everyone welcomes the change.
Niels Larsen Jr., 66, of Appleton, said he fears . . . More Article
(Article on DisabilityVoice, Tuesday, Nov. 03, 2009)
Article Posted By Timothy A Carey
By Ed Lowe of Appleton Post Crescent- Nov. 03, 2009
::: View The Entire Article ::: |
Health and Medical
The H1N1 Vaccine
W A R N I N G
An H1N1 vaccine has been developed and is available in two varieties – intranasal and injectable. . .
The intranasal form (sprayed into the nose) is already available in most parts of the country. However, it’s important to know that this variety of the vaccine is not recommended for those affected by neuromuscular disease since it contains an attenuated (weakened) form of the H1N1 virus. . . . More Article
(Article on DisabilityVoice, Tuesday, Oct. 20, 2009)
Article Posted By Timothy A Carey
By Muscular Dystrophy Association-- Oct. 16, 2009
::: View The Entire Article ::: |
Health and Medical
MDA’s H1N1 Resource Center
It’s no secret that more than one kind of flu virus will be spreading through our communities in the coming months, including seasonal influenza and the 2009 H1N1 flu. Because individuals affected by neuromuscular disease are at increased risk of serious and possibly devastating complications from H1N1, it’s important that everyone stays informed and . . . More Article
(Article on DisabilityVoice, Tuesday, Oct. 20, 2009)
Article Posted By Timothy A Carey
By Muscular Dystrophy Association-- Oct. 05, 2009
::: View The Entire Article ::: |
Health and Medical
New guidelines for weight gain during pregnancy
March of Dimes eNewsletter- July, 2009
If you’re an expecting mommy or a woman trying to get pregnant, listen up. The Institutes of Medicine (IOM) released a report today with new recommendations for how much weight a woman should gain during pregnancy, including . . . More Article
(Article on DisabilityVoice, Monday, July 27, 2009)
Article Posted By Timothy A Carey
By March of Dimes eNewsletter- July, 2009
::: View The Entire Article ::: |
Health and Medical
Swine flu strikes 10 at Minn. camp for kids with muscular dystrophy
The Minnesota cases played a part in the national association canceling its summer camping programs.
By PAUL WALSH, Star Tribune- June 21, 2009
Seven children and three adults at a summer camp in Minnesota for kids with muscular dystrophy contracted swine flu this month, contributing to the decision by the. . . More Article
(Article on DisabilityVoice, Monday, June 22, 2009)
Article Posted By Timothy A Carey
By PAUL WALSH, Star Tribune
::: View The Entire Article ::: |
Health and Medical
Mentally Disabled Forced Into 'Fight Club' at Texas Home
Night Shift Made Cell Phone Videos of Residents at Facility in Corpus Christi
Angela M. Hill, Joseph Rhee and Brian Ross-- May 12, 2009
Terrified residents, at a Corpus Christi, Texas, state school for the mentally disabled were forced to be part of a brutal "fight club" operated by night shift employees, who made videos of the sessions with their cell phones . . . More Article
(Article on DisabilityVoice, Wednesday, May 13, 2009)
Article Posted By Timothy A Carey
By Angela M. Hill, Joseph Rhee and Brian Ross
::: View The Entire Article ::: |
Health and Medical
Study Raises Estimate of Paralyzed Americans
Roni Caryn Rabin-- April 20, 2009
It may be hard to fathom, but in the haystack of government health statistics that track cancer, car accidents, twin births to women over 40, fat teenagers and people who quit smoking, there has been no reliable estimate of the number of Americans affected by paralysis. Until now. . . . More Article
(Article on DisabilityVoice, Thursday, May 07, 2009)
Article Posted By Timothy A Carey
By Roni Caryn Rabin (New York Times)
::: View The Entire Article ::: |
Health and Medical
Postpartum Depression
March, 2006
About one out of every eight women has postpartum depression after delivery. It is the most common complication among women who have just had a baby. Postpartum depression is a serious medical condition. It is not something a woman can control. It is not a sign of being . . . More Article
(Article on DisabilityVoice, Tuesday, May 05, 2009)
Article Posted By Timothy A Carey
By March Dimes
::: View The Entire Article ::: |
Health and Medical
Healing Autism With Horses
April 14, 2009
A new book, “The Horse Boy,” that chronicles a father’s trip to Mongolia to ride horses and visit shamans as part of an effort to heal his son’s autism. Ms. Rich asked several top autism experts whether the book offers important insights or false hope for families coping with autism. ... More Article
(Article on DisabilityVoice, Thursday, April. 16, 2009)
Article Posted By Timothy A Carey
By Reporter Motoko Rich
::: View The Entire Article ::: |
Health and Medical
Sexual Violence Within The Disabled Community
April 2, 2009
Sexual violence is unwanted sexual behavior exhibited as a means of gaining power and control over another person. Sexual violence includes nonverbal, verbal and physical sexual harassment; sexual assault; rape; sexual battery; and forced sodomy. Sexual violence occurs most frequently between those who are or have been in an intimate relationship as well as between new or former acquaintances, but it can also occur between strangers in both opposite and same sex encounters. The Centers for Disease Control and Prevention divides sexual violence into five... More Article
(Article on DisabilityVoice, Saturday, April. 11, 2009)
Article Posted By Timothy A Carey
By Amber A. Milks
::: View The Entire Article ::: |
Health and Medical
The New Age of “Brain Training":
Commit to Lifelong Learning and Stay Sharp
Lifelong learning means keeping your mind and body engaged – at every age – by actively pursuing knowledge and experiences. Lifelong learning is being constantly curious. It is realizing that the world is an infinitely fascinating place and that you’ll be happier, more motivated – when you keep yourself learning for a lifetime. The purpose of learning is growth, and our minds, unlike our bodies, can continue growing as we continue to live. – Mortimer Adler, author/philosopher Lifelong learning is so important to seniors, in fact, More Article
Additional Information: Brain Resources for Seniorshttp://www.dana.org/resources/seniors)
Sponsored by the Dana Foundation
SharpBrains(http://www.sharpbrains.com)
A market research and advisory company geared toward the cognitive health market
(Article on DisabilityVoice, Sunday, April. 04, 2009)
Article Posted By Timothy A Carey
Found on Depend.com Sources Listed on Depend Article
::: View The Entire Article |
Health and Medical
Note From DVS: I encourage everyone to read this article and at least weigh the facts for yourself. If you are a strong supporter of President Obama, I still encourage you to read this article despite the author's anti-Obama sentiments. There are some compelling arguments in this article.
The only way people can have a voice is if our minds aren't closed every time we hear something we think we might not agree with.
Democrats, Health Care "Reform,"
And Your "Duty To Die"
Sunday, February 15, 2009
Townhall.com
Welcome to the Era of Obama. You now have a duty to die. . . .
if current trends continue, your United States Government will determine that you have a “duty,” an obligation, to die. ...
Europe has led to worsening government deficits, and increased healthcare costs, and efforts to contain those costs have resulted in the denial of treatment to those persons not expected to live much longer - - that is, the elderly and the seriously ill. . . .
The idea is that, once you have lived “long enough;” after you have consumed your “fair share” of the earth’s resources; . . .
further efforts to prolong your life just simply “aren’t worth it;” you will then have a responsibility to accept these consequences, and to accept that you’ll just have to get along without life-sustaining healthcare. . . .
More Article
(Article on DisabilityVoice, Sunday, Feb. 22, 2009)
Article Posted By Timothy A Carey
ByAustin Hill
View The Entire Article ::: |
Health and Medical
An Anti-Frailty Pill for Seniors?
University of Virginia Health System Study Shows New Drug
Increases Muscle Mass in Arms and Legs of Older Adults.
CHARLOTTESVILLE, VA (November 4, 2008) - Researchers at the University of Virginia Health System report that a daily single oral dose of an investigational drug, MK-677, increased muscle mass in the arms and legs of healthy older adults without serious side effects, suggesting....More Article
(Article on DisabilityVoice, Sunday, Dec. 22, 2008)
Article Posted By Timothy A Carey
From University of Virginia Health Systems
View The Entire Article ::: |
Medical or Assistive Tech
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Having a Disability In a Technological Age
Living with a disability is difficult and it can be frustrating not being able to do some things on your own. Having difficulty doing everyday tasks the average person takes for granted makes for even more frustration. It doesn’t matter if you have to use a wheelchair or you require a ventilator for breathing, always relying on caregivers and medical equipment to survive is difficult. However, in the past 15 years There have been soaring technological advancements in ...MORE
(Article on DisabilityVoiceSpace, October, 27, 2008 )
Article Written by Jason from MN, Edited and Posted by Timothy A Carey
Full Article : : Go to Assistive Tech Section
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Medical Procedures
People with Duchenne Muscular Dystrophy (DMD) Undergoing Sedation or General Anesthesia
(DisabilityVoiceSpace Article Out, Saturday, July 26, 2008)
Article by: Timothy A Carey
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According to the MDA (Muscular Dystrophy Association), guidelines for patients with Duchenne Muscular Dystrophy (DMD) undergoing anesthesia or sedation have been jointly released by MDA and American College of Chest Physicians. Among the physicians that develop these guidelines were pulmonologists, respiratory therapists, several MDA clinic directors, and Valerie Cwik. Valerie Cwik is MDA's Medical Director and Vice-President of Research. People with DMD have weaker muscles including the muscles of the lungs and heart and this is especially true with older people with DMD. So you would think that it would be even more important to watch the functioning of the lungs and heart of DMD patients during surgery. Hopefully doctors with DMD patients have already been using extra care, but now with these new guidelines doctors will have something to go by when putting their patients under anesthesia or sedation.
Among the many recommendations include not using gas anesthetics, giving respiratory support even during sedation, and monitoring carbon dioxide levels. Also, they recommended not using depolarizing muscle relaxants, such as cinylcholine, having an intensive care unit for postoperative care, and using extreme caution when giving supplemental oxygen. The physicians who helped come up with these guidelines noted the importance of guidelines because people with DMD are now living longer and to an age where there are more possibilities for needing procedures where general anesthasia and sedation is needed. Supposedly there are over a dozen guidelines, but DisabilityVoiceSpace was unable to obtain them from the American College of Chest Physicians website without paying for them.
If you are a loved one of someone with DMD who is going to be having a procedure done or if you are this DMD person make sure to inform the doctor that there are guidelines.
The website for Parents Project Muscular Dystrophy has an article on anesthasia and children with muscular dystrophy. This article sheds a little more light on this subject.
Websites relating to this article:
http://www.mdaquest-digital.com/mdaquest/20080304/?pg=19
http://www.parentprojectmd.org/site/PageServer?pagename=tc_anesthesia
http://www.chestjournal.org/cgi/content/abstract/132/6/1977
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Research and Treatments
Potential New Treatment Paradigm, PTC124
(Article Out, Thursday, July 17, 2008)
Read Story from Source :::
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DVS Speaks::
This article is a very important notice about a new revolutionary drug called PTC124 that could potentially help thousands of people with disabilities.Genzyme Corporation and PTC Therapeutics have agreed to collaborate in the development and marketing of this new drug. PTC124 allows the body to skip errors on genes, when creating proteins, that occur in areas that are not needed for protein production, but nevertheless cause an important protein to be produced. It has been tested on children with Duchenne Muscular Dystrophy and it produced the missing protein that causes people with this disease to lose their muscles and life by their early 30s. This drug is also being tested for helping cystic fibrosis, but it could potentially help 2,400 genetic diseases. According to this article 20,000 children are born with Duchenne Muscular Dystrophy worldwide every year (one in 3,5000 male children) and cystic fibrosis affects almost 70,000 people worldwide.
I just hope when this drug is finally produced, it will be given at a fair price and that insurances will help pay for it.
More Info: http://www.mda.org/
http://www.parentprojectmd.org
http://www.cff.org/
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