WASHINGTON, March 31 (UPI) — Lupus patients often downplay pain and other symptoms to their physician and family and friends, a U.S. survey indicates.

The survey of 1,000 adults conducted by Roper indicated 87 percent of those diagnosed with lupus report playing down symptoms to their families, while 52 percent said they minimized symptoms to their doctor.

However, 72 percent of physicians surveyed said they did not think their patients minimized symptoms.

“We are seeking further Congressional support for adequate training of healthcare professionals to better recognize, diagnose and treat lupus,” Margaret Dowd, president of the Lupus Research Institute, said in a statement. “The survey confirmed the need for greater professional understanding of the disease.

The Lupus Research Institute is urging every member of Congress to join the new Congressional Lupus Caucus to raise awareness of lupus among patients, their caregivers, healthcare professionals and researchers. The more people know about lupus, the quicker symptoms are recognized and the more effective the treatment.”

A complex autoimmune disease, lupus affects more than 1.5-million U.S. adults, primarily women.

The survey was conducted on behalf of Human Genome Sciences and GlaxoSmithKline. No margin of error was provided for the survey.

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More than 1.5 million people are living with Parkinson’s disease in the U.S.

While the disorder tends to be more common in older people, it drastically changed one woman’s life before her 40th birthday.

A new treatment is now offering relief.

Driving, pouring coffee, and flipping through a book, all simple things we take for granted, became a big challenge for Resa King.

Resa said, “For me, it was really intolerable. I couldn’t really walk because people thought I was drunk.”

At just 39, Resa got the news. her constant shaking and inability to control her own movements was an early onset of Parkinson’s Disease. Medicine initially offered relief, but the side effects became just as debilitating.

Resa said, “You take the medication four times a day, so you go through this valley, rising four times a day.”

Desperate for relief, Resa tried deep brain stimulation or DBS.

Dr. Helen Bronte-Stewart, MD, MSE, is an Associate Professor at the Department of Neurology and Neurological Sciences and Director, Stanford Movement Disorders Center at Stanford Hospitals and Clinics.

Dr. Bronte-Stewart said, “The advantage of deep brain stimulation is that you don’t take anything by mouth, so it’s ‘on’ all the time, so the patients don’t go into ‘on’ periods and ‘off’ periods.”

Stanford doctors implanted a pacemaker-like device into Resa’s chest. Wire from there went into Resa’s brain, sending out pulses of electricity that help ease the uncontrolled movements. like any brain surgery, there’s a risk of infection and hemorrhaging. but after DBS, patients often experience less stiffness and tremors. most are able to cut the medications in half.

Dr. Bronte-Stewart said, “That translates into being able to walk faster, take bigger strides, and have a more predictable lifestyle.”

While DBS did not erase all of Resa’s symptoms, her close friends saw a change immediately. And for Resa, those everyday tasks became that much more bearable.

Resa said, “Now, people come up to me and say, ‘You’re doing so much better.’ I say, ‘Does it really show that much?’ they say, ‘Oh yeah, it shows.’”

The therapy typically works best in the mid-stages of the disease and does not help patients with speech or cognition problems.

This surgery is being done locally.

A few years back I took you inside the operating room with neurosurgeon Dr. Robert Yount for the procedure.

If you would like to see that story, click here.

TOPIC: SHOCKING THE SHAKES FROM PARKINSON’SREPORT: MB #3265

BACKGROUND: Parkinson’s disease (PD) is a disorder of the brain that causes individuals to experience tremors and difficulty with walking, movement, and coordination. the disorder may affect one or both sides of the body. according to the National Institute of Neurological Disorders and Stroke, there is no cure for PD, but a variety of medications and therapies can provide dramatic relief from the symptoms. One such treatment is deep brain stimulation (DBS). DBS is a surgical procedure used to treat a variety of disabling neurological symptoms, but it’s commonly used to treat PD patients. in 2002, DBS was FDA-approved to treat Parkinson’s.

TREATMENT: During DBS, a thin lead containing electrode contacts is implanted into a specific target area in the brain. the lead extends through a small opening in the skull below the skin and is connected to an extension wire with a connection behind the ear. the wire is connected to an impulse generator that is implanted under the skin just below the collarbone. Once the system is in place, electrical impulses are sent from the neurostimulator up along the extension wire and the lead and into the brain. These impulses block the electrical signals that cause PD symptoms. Programming of the stimulation is easy and painless using an external magnetic control box. the patient is left awake during the surgery (which typically lasts two to three hours). on average, the hospital stay is 24 hours. the stimulators are turned on for the first time three weeks after implantation. (SOURCE: University of Miami)

PROGNOSIS: at present, DBS is used only for patients whose PD symptoms cannot be adequately controlled with medications. DBS specifically helps treat tremors, rigidity, stiffness, slowed movement, and walking problems. although most patients still need to take medication after undergoing DBS, many experience a significant reduction of their PD symptoms and are able to reduce their medications. the amount of reduction varies from patient to patient. the reduction in dose of medication leads to a significant improvement in side effects such as dyskinesias (involuntary movements caused by long-term use of levodopa). in some cases, the stimulation itself can suppress dyskinesias without a reduction in medication. (SOURCE: Mayo Clinic)

FOR MORE INFORMATION, PLEASE CONTACT: Stanford Hospitals & Clinics Movement Disorders Center(650) 723-6469

When one is living with a fatal illness, often his/her fear or pain is increased by lack of control of the situation as one is re-examined, tested and treated as the end grows near.

Hospice care, however, gives one much control over one`s final months through its aggressive pain and symptom management, as well as supporting both the dying person and his or her family to enable them to face what is to come.

It is little wonder that hospice has become increasingly popular as an option for people living with a terminal illness. Hospice does not attempt to prolong life, nor does it hasten death, but rather works with the individual and his or her family to improve the quality of one`s life.

Most people would rather die in their home or place or residence supported by loving family and other caregivers rather than in a sterile high-tech hospital environment. Additionally, Hospice is a more cost-effective way in which to care for one who is terminally ill.

In 2008, nearly two of every five people who died in the United States were receiving hospice care at the time of their death. As the knowledge of hospice increases, so do the referrals and admissions. Approximately 1.5 million people were served by hospice in 2010.

Hospice care focuses on comfort rather than cure when one`s illness is not curable. It is often recommended for people who have fewer than six months to live. Care is provided wherever a person resides including their home, an assisted living or skilled nursing facility,or in a nursing home. On occasion, Hospice is provided in a hospital.

Hospice care benefits are available under Medicare, Medicaid and most health insurance plans.

One`s hospice team develops a plan of care to reduce pain and symptoms. The team also assists by:

Offering support to the individual and family to enable them to endure the emotional and spiritual aspects of dying.

Providing necessary medications, equipment and supplies.

Teaching family members how to care for their loved one.

Being available to answer a question or make a visit when pain or symptoms

arise.

Supporting the grieving family for one year after their loss.

Hospice continues to attempt to overcome many myths and ill-conceived ideas, such as the myth that by choosing hospice, one is “giving up.” rather, it is a choice to regain control over what one wants or needs with the knowledge that the Hospice of the Plains Team will do everything possible to enhance the quality of one`s life as defined by him or her.

Some individuals actually become medically stable to the point that they no longer meet the criteria of six months or less to live if the disease continues at its present course and are discharged or “graduate from Hospice.”

Individuals may also end their Hospice services should they decide to pursue curative treatment.

Unfortunately, many delay end-of-life discussions with their families because the subject is painful.

Oncologists also delay the conversations with their patients, as shown by a recent survey that stated that 65 percent said they would discuss the fact that one had only four to six months to live even though he or she was still feeling well, but only 25 percent of oncologists would broach the subject of hospice with that patient.

Based on the Hospice of the Plains family satisfaction surveys received, a frequently made comment is that the family regrets not seeking hospice`s services sooner.

Hospice recommends that those who might need services, including community bereavement groups and understanding advance directives, not put off calling.

Hospice of the Plains has been providing quality Hospice services in northeastern Colorado for 15 years. Hospice of the Plains serves Morgan, Logan, Phillips,Sedgwick, Washington and Yuma Counties and the eastern border communities of Weld County with staff and volunteers living throughout Northeastern Colorado.

To learn more about Hospice of the Plains, call the office in Wray, (970)332-4116, Sterling (970) 526-7901 or the Brush workstation (970) 842-6060.

NEW YORK — It may be common, but the stats are still staggering. Last year, 4.5 million U.S. kids were diagnosed with attention deficit hyperactivity disorder or ADHD. That?s more than seven percent of all children in the U.S. But a new study shows more than one million of those kids may be misdiagnosed.Once she starts reading, Katy Kluck can’t stop, so mom was puzzled when Katy started struggling with schoolwork.”I couldn’t really focus because there were so many questions on the page,” Katy Kluck said.”Once they heard that Katy could not focus, immediately they said well, she has an ADD problem,? Ann Kluck, Katy’s mother, said.Afraid of using meds, Ann did some research, which led her to an optometrist.”One of the questions we ask parents is to decide whether it’s an organic attention problem or maybe more related to a vision problem,” Daniel Press, O.D., a developmental optometrist at Family Eyecare Associates, explained.Exams found Katy’s eyes didn’t work well together, the words moved and turned blurry. She decided to kick-off eight months of vision therapy. Vision Therapy consists of a workout using computer gaming, training the brain to use both eyes together.”One of the eyes sees the red target, the other one only sees the blue target, so if you’re going to do this well you have to use both eyes well together,” Dr. Press said.Vision experts say 60 percent of kids labeled as problem learners actually suffer from undetected vision problems, but some have doubts. the American Academy of Pediatrics says vision therapy may give parents and teachers a false sense of security that a child?s problems are being addressed.”I was always the kid who was falling behind in class,” vision therapy patient, Caroline Moore, said.Caroline Moore says vision therapy worked for her.”My grades skyrocketed back up!” Moore said.So did katy?s.”It makes me feel good because I’m getting good grades,” Katy Kluck said.Lack of proof or legit solution? One mom found the answer in her child?s eyes.Vision therapy is not typically covered by vision insurance, but many major medical plans do cover this therapy. Six months to one year of therapy sessions can range from 25 hundred to five thousand dollars.Vision Revision For ADHD Diagnosis — Research SummaryADHD — THE BASICS: ADD and ADHD are psychiatric disorders characterized by inattentiveness or hyperactivity and compulsiveness which hinder a childs’ academic or social performance. because there is no objective clinical test to confirm ADD or ADHD, the diagnosis is based on a set of subjective symptoms. if children exhibit any six of nine characteristics in either category, they are labeled ADD or ADHD. In an effort to help children who are struggling at school because of their short attention spans, many parents, teachers, and doctors make the assumption that these children have ADD and start them on medications. unfortunately, they are often treating the symptoms and not the real cause. High distractibility and difficulty remaining on task are not the sole domain of ADD. (SOURCE: childrenvision.com)THE PROBLEM : Children with undetected vision problems can exhibit symptoms similar to ADD. Studies show that approximately 20% of school-aged children suffer from eye teaming or focusing deficits which make remaining on task for long periods of time difficult. like those with ADD, children with vision-based learning problems are highly distractible, have short attention spans, make careless errors, fail to complete assignments, and are often fidgety and off task. however, their inability to remain on task is caused by the discomfort of using their eyes for long periods of time at close ranges, not true deficits in attention. unfortunately, parents and teachers are not trained to recognize the difference and these children are often misdiagnosed. (SOURCE: childrenvision.com)THE CONNECTION: the connection between eye teaming problems and attention deficit disorders was recently documented in medical journals. the latest research study found children diagnosed with ADHD were three times as likely to have a ?convergence insufficiency? than children in the rest of the population.Dr. David B. Granet, director of the Ratner Children’s Eye Center of the University of California in San Diego and a nationally known pediatric ophthalmologist, explains that because this kind of eye teaming problem causes children to have difficulty keeping both eyes focused on a close target, it becomes more difficult for them to concentrate on reading, one of the ways doctors diagnose ADHD. As a result of his research, Dr. Granet says no child should be diagnosed with ADD or ADHD until their visual system has been checked. the reason, the chance of a misdiagnosis is simply too great. (SOURCE: childrenvision.com)

DURHAM, N.C.–(BUSINESS WIRE)–An article published recently in Psychosomatic Medicine 72:(November) 897-904) showed that the Williams LifeSkills video training program can reduce stress in individuals who care for a relative with Alzheimer’s disease. The impact of the 5-week video training was significant: depressive symptoms, perceived stress, anxiety and blood pressure were all reduced. These improvements were maintained or even enhanced six months after the video training was delivered. in this controlled study, caregivers were alternately assigned to two groups: one that participated in a video-delivered plus telephone coaching coping skills training program and another group that was wait-listed and received the training later.

“People who care for the 5 million Americans afflicted by Alzheimer’s disease are usually family members and they have been found to be at increased risk of developing both physical and mental health problems”

“People who care for the 5 million Americans afflicted by Alzheimer’s disease are usually family members and they have been found to be at increased risk of developing both physical and mental health problems”, commented Virginia Williams, President of Williams LifeSkills, the developer of the program and lead author on this paper. “These individuals are extremely stressed, and usually don’t have the time or the financial resources to attend more formally delivered coping skills programs. The advantage of the Williams LifeSkills video training is that is not only less costly, but can be viewed and studied in their home at times most convenient for the caregiver”.

Redford Williams, a co-developer of the training program and Professor of Psychiatry and Medicine at Duke University, added, “few stress reduction programs for caregivers have been shown to produce improvements in both psychological and biological stress markers. in this study, 116 caregivers were recruited over a 2-year period and were assessed before and up to six months later for both psychosocial and biological markers of stress. Compared to those in the wait list group, caregivers receiving video coping skills training not only reported lower levels of anxiety, perceived stress and depression, but were also found to have clinically meaningful reductions in blood pressure.”

Williams LifeSkills is a North Carolina based company that develops coping skills training programs to reduce physical and emotional stress in a wide variety of populations, including medical personnel, cardiac patients, teens and law enforcement officers. more information about Williams LifeSkills and its coping skills programs can be found at williamslifeskills.com

Reference: Psychosomatic Medicine 73:000–000 (2011)

Hepatitis B sufferers and the government are holding talks at Sapporo District Court on a lawsuit filed by hepatitis B patients who accuse the government of failing to take steps to eliminate the risk of hepatitis B virus infection from needle-sharing during mass vaccination programs before 1989.

In October, the government offered to pay ¥5 million, ¥10 million or ¥25 million to hepatitis B victims in compensation depending on the degree of suffering. The compensation would also have covered hepatitis B victims who have not joined lawsuits filed by 420 sufferers at 10 district courts. The government estimated that it would have to spend up to ¥2 trillion over 30 years.

The plaintiffs, however, declined the government’s offer because the amount offered was lower than the ¥12 million to ¥40 million offered to hepatitis C sufferers. And the proposed compensation would not cover hepatitis B carriers who have not developed symptoms. The plaintiffs argue that the standards for recognizing people as hepatitis B sufferers are too severe.

The framework for the relief of hepatitis C sufferers was established in 2008. they were infected through the use of blood products and are estimated to number about 2,000. In contrast, it is estimated that some 473,000 people were infected with hepatitis B during mass vaccinations. In a lawsuit filed by five hepatitis B sufferers, the Supreme Court in 2006 held the state responsible for causing the infections through its failure to tell local governments to take preventive steps such as not sharing needles. it ordered the state to pay each plaintiff ¥5.5 million in compensation. since then, however, relief efforts have made no progress.

On Oct. 26 the Sapporo District Court asked the government to consider paying compensation to hepatitis B virus carriers regardless of whether they have exhibited symptoms or not. The government promised to consider the request. meanwhile, the plaintiffs continue to demand the same compensation that was given to hepatitis C sufferers. Both sides should strive to remain coolheaded so that they can reach a compromise.

Patients suffering cholera symptoms receive treatment at the St. Nicholas hospital in Saint Marc, Haiti. After at least 20 people died when Hurricane Tomas brushed past Haiti, officials are now turning their attention back to a worsening cholera epidemic that has killed more than 500 people and hospitalized more than 7,300. –AP Photo/Ramon Espinosa

PORT-AU-PRINCE: Health officials said Monday they are examining at least 120 suspected cases of cholera in Haiti’s capital, the most significant warning sign yet that the epidemic has spread from outlying areas to threaten as many as 3 million people.

Samples from patients in Port-au-Prince are being tested in a laboratory to confirm the presence of vibrio cholera bacteria, which has already killed at least 544 people in Haiti, Health Ministry Executive Director Gabriel Timothee told the Associated Press.

If confirmed, the bacteria could imperil an estimated 2.5 million to 3 million inhabitants, nearly half of whom have been living in tents or under tarps in easily flooded encampments since their houses were destroyed in the Jan. 12 earthquake.

‘‘We are working on the cases. … We don’t have confirmation yet,’’ Timothee said.

He said many of the hospitalized patients are believed to have recently arrived from parts of Haiti such as the Artibonite Valley, where the epidemic was first registered and has done its most ferocious damage. More than 6,400 of the known 8,138 cases to date have been in the agricultural region, clustered around the Artibonite River.

At least 114 of the people suspected of having the disease in the capital are in the Cite Soleil slum, the expansive oceanside shantytown at the capital’s far northeastern edge and its closest point to the valley.

Since its discovery in late October, the disease has spread to half of Haiti’s 10 administrative regions, or departments. More than 200 people have been hospitalized in the West department, where Port-au-Prince is located, but no cases of cholera have yet been confirmed within the limits of the capital city.

Cholera had never been documented in Haiti before its appearance last month.

In little more than three weeks it is suspected of infecting tens of thousands of people, though only about a quarter of people infected normally develop symptoms of serious diarrhea, vomiting and fever. Nearly four per cent of the thousands hospitalized have died, most from extreme shock brought on by dehydration.

Officials are concerned that floods triggered by Hurricane Tomas on Friday and Saturday could exacerbate the spread of the disease, which is transmitted through the consumption of fecal matter contained in contaminated water or food. the release of a dam on the Artibonite River caused the infected waterway to swell Monday, but there were no reports of major flooding.

Living conditions in Port-au-Prince’s earthquake camps have ‘‘deteriorated as a result of the storm,’’ Boston-based Partners in Health said Monday.

‘‘Standing water, mud, lack of garbage collection, and limited sanitation availability make the camps a potential flashpoint for cholera outbreak,’’ the group said.

Humanitarian groups and Haitian health care workers have been working in Port-au-Prince to prepare for cholera, informing residents about preventative measures such as regular hand-washing and sufficiently cooking food as well as setting up clinics in expectation that the disease would spread to the city.

The origin of the outbreak continues to be a source for debate. Analysis by the US Centers for Disease Control and Prevention has found that the cholera outbreak in Haiti most closely matches a strain of the disease found in South Asia.

Public health experts, including UN Deputy Special Envoy to Haiti Paul Farmer, who co-founded Partners in Health, have called for an aggressive investigation into the origin of the outbreak.

They say that should include looking at the unconfirmed hypothesis that cholera was introduced by UN peacekeepers from Nepal, a South Asian nation where the disease is endemic. Those peacekeepers are at a UN base on a tributary of the Artibonite River, which has been found to be contaminated with cholera.

This syndicated post originally appeared at public.dawn.com/2010/11/09/cholera-epidemic-kills-at-least-544-in-haiti.html on 9 November 2010