Minority children with autism lack access to specialists

— African American and Hispanic children are far less likely to be seen by specialists – for autism, but also other medical conditions – and also less likely to receive specialized medical tests than their white peers, according to a new study published Monday in the journal Pediatrics.

Dr. Sarahbeth Broder-Fingert and colleagues studied the records of 3,615 children with autism at the Massachusetts General Hospital, specifically looking at the rates of both referral to specialists and medical tests undertaken. They discovered that children from African-American and Hispanic families were far less likely to receive specialized care or specific medical tests such as a sleep study, colonoscopy, or endoscopy.

When compared to their white peers, African American children were three times less likely to see a gastroenterologist or nutritionist, and half as likely to see a neurologist or mental health specialist, according to the study. The story is similar among children from Hispanic families.

If a child has autism, the best outcomes are achieved through a combination of early diagnosis of the disorder and early intervention with behavioral therapies.

Another important element is the treatment of conditions which often coexist with autism, such as psychological, neurological, and gastrointestinal problems. A referral to a specialist is often needed.

Autism is a developmental disorder that affects between 1 in 50 and 1 in 88 children in the United States, according to the Centers for Disease Control and Prevention. It is characterized by difficulties in communication and social interaction. Coexisting neurological problems such as seizures, and psychiatric disorders such as attention deficit hyperactivity disorder (ADHD), are common and affect up to a third of children with autism. Gastrointestinal complaints such as constipation, acid reflux, and abdominal pain are also frequently seen, with symptoms reported in 17% to 85% of cases.

What’s to blame?

The exact reasons behind these findings remain unclear. One explanation may be that minority families face greater barriers in accessing specialist services. Lower numbers of local specialists, transportation issues, and lack of a regular health care provider have all been identified as problems for minority children.

Additionally. minority families may have beliefs that lead to the use of non-traditional services, or attribution of a child’s symptoms to non-medical causes. Even when obtaining referral to a specialist, children from minority families can face challenges in maintaining regular follow-up.

Another issue that remains to be clarified is whether the symptoms of autism are the same across racial and ethnic groups. Some evidence suggests that there may well be differences. For instance, some research has shown that children from minority groups may have more co-occurring symptoms of aggression. If aggression becomes the dominant issue during consultations, then other medical issues may be missed, and opportunities for specialist referral lost.

One final possibility is that children from white families are being referred too frequently to specialists, with subsequent unnecessary medical investigation. This could certainly be a problem given the lack of standardized guidance on how to treat and assess medically complex symptoms in children with autism.

“This is the first study to identify these disparities in specialist referral in children with autism,” said Dr. Christopher McDougle, director of the Lurie Center for Autism at Massachusetts General Hospital, who was not involved with the current study. “Autism is a medically complex condition and we must ensure that people with autism receive the specialist treatment they need, irrespective of racial and ethnic background.”

This study adds to the body of research showing race and ethnicity as being important factors in the diagnosis and treatment of autism. Studies conducted during the last decade have consistently noted that children from minority groups face substantial delays in obtaining an autism diagnosis.

African American children in particular are more likely to be initially misdiagnosed, and face an average delay in autism diagnosis of 18 months compared to their white peers. Some have suggested that while white children may be diagnosed with autism when they have mild to moderate symptoms, African-American children tend to be diagnosed when they have severe symptoms, with milder cases going undetected.

Dr. Arshya Vahabzadeh is a resident psychiatrist at Emory University’s Department of Psychiatry and Behavioral Health.


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Facing fatherhood, he lost 140 pounds

— Tyrone Garrett’s father wasn’t around while he was growing up. So when Garrett’s girlfriend, Whitney Hammond, told him she was pregnant, he knew he had to make a change.

Garrett, then 26, weighed 335 pounds. Like many members of his family, he had high blood pressure, but he refused to take medication. One time at work, his heart started beating so fast he could see it moving up and down through his shirt. Hammond rushed him to the doctor, who warned that he was dangerously close to having a heart attack.

“It was the scariest thing in my life,” Garrett says.

That experience, combined with the arrival of baby London, on March 5, 2011, finally inspired him to get fit.

“Being around for my only child was something I made a priority,” Garrett says, his voice warming as he talks about his daughter. “She’s awesome.”

Garrett bought a set of workout clothes and a pair of running shoes and headed to the gym. “I remember it like it was yesterday,” the Manchester, Connecticut, resident says. “I was nervous in front of everybody because I was so obese.”

His first workout included a little bit of everything. Without a trainer, Garrett followed his instincts. His only rule in the beginning was to sweat. A lot.

After a while, he turned to the Internet to learn more about nutrition. He started watching what he ate and counting calories. He stayed away from foods that were high in sodium to lower his blood pressure and avoided sweets.

In the first month, he dropped 50 pounds. Over the next year and a half, he lost 130 pounds. He has shed about 10 more pounds since then.

Garrett wakes up every morning at 3 or 4. He hits the gym, doing at least 45 minutes of cardio and two hours of weight training. Sometimes he swims laps. Other times he sits in the sauna to “sweat out the toxins.” He brings light snacks such as bananas and protein bars to keep up his energy during the long workout.

After three or four hours, he heads to work. He has a full-time job and two part-time ones to support Hammond and London.

“They are my drive and my support system on this (w)eight loss journey,” he wrote on CNN’s iReport.com.

After work is daddy-daughter time. Occasionally, if there’s time after London is in bed, Garrett heads to the gym again.

Hammond fully supports her fiance’s near-obsessive workout schedule. “(He) just wants to maintain what he worked so hard for,” she wrote in an e-mail. “And if I need him, no matter what machine he’s doing, he will drop it and run to his family.”

The couple met in high school and have been together for almost 13 years. Their wedding is set for June 15.

“His weight loss has changed his whole outlook on life,” Hammond says. “He loves his new lifestyle and only wants to go up from here.”

Garrett’s changes have crept into Hammond’s life as well. She’s altered her eating habits and takes her daughter on daily walks to stay active. She’s looking forward to a long life with her future husband.

Garrett doesn’t allow himself full cheat days — “the fear of messing up and going backward is still there” — but he does splurge once in a while on some extra chicken wings or a bigger meal than usual.

There are days when his legs and arms hurt and his bones ache from all the exercise, but he reminds himself that no one else can do the work for him. He’s at 194 pounds and wants to reach 180. That said, any extra weight loss at this point is simply a bonus to being healthy.

“As long as I can wake up every morning and breathe in and out, I’m cool with everything else,” Garrett says.

He loves to go outside and play with his daughter without breathing heavily or sweating excessively. He likes not having to worry about going to the doctor or taking medications. He’s thrilled that others have been inspired by his story; a co-worker lost 80 pounds and several family members have lost more than 50.

“It’s coming from me,” he says, almost in disbelief. “You never would have thought I would be a lean guy. Sometimes I have to pinch myself to make sure it’s real.”

Follow Jacque Wilson on Twitter @jdwilson2 and Google+.


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2013 World Elder Abuse Awareness Day

The coalition has representatives from many county departments including: Aging, Social Services, Health, Public Library, Human Relations Commission, and Police, as well as local organizations and businesses such as AARP, the Pro Bono Counseling Project, Legal Aid Bureau of Maryland, Family and Children’s Services, Springhouse, Rite Aid, Home Watch Caregivers, Meals on Wheels of Central Maryland, Community lawyers and Genesis Health Care.

In recognition of World Elder Abuse Awareness Day, BC-REST presents a rally and seminar at the Towson Public Library located at 320 York Road in Towson, Maryland on Friday June 14, 2013 from noon to 2:15 p.m. A light lunch will be available to all attendees.

The event will educate the public on the problem of elder abuse, highlight the efforts of Coalition organizations to prevent and stop elder abuse, and generate a “call to action”— ways in which each participant at the rally can help to keep seniors and vulnerable adults safe from abuse, neglect and exploitation.

The rally is free and open to the general public, with particular focus to family caregivers, older adults and senior advocates.

For more information, rally details and to register for the seminar, call 410-887-4200.

Should I be concerned about new virus?

— When the head of the World Health Organization says a new virus is her “greatest concern right now,” people worldwide may wonder whether they should be concerned.

This new coronavirus, which experts recently named MERS-CoV or Middle East respiratory syndrome coronavirus, first surfaced in Saudi Arabia in March 2012.

It’s in the same family of viruses as SARS (severe acute respiratory syndrome – coronavirus) as well as the common cold — but the new virus is not SARS.

“There’s not the same level of concern as there was in Hong Kong or Toronto during the SARS epidemic,” says Dr. Mark Denison, a professor of pediatrics and longtime coronavirus researcher at Vanderbilt University.

Unlike SARS which sickened more than 8,000 people in 2003 and killed 773 worldwide, this new coronavirus does not spread easily between humans — at least not yet.

It’s too early to tell whether MERS-CoV is going to spread or just burn out, so it’s essential that health officials stay vigilant, Denison says. “What’s important is continued reporting of active cases which allows for better surveillance.”

Should I be concerned about MERS-CoV?

So far only 49 cases of MERS have been reported, including 27 deaths. Most of those were older men with other health problems. And most contracted the virus in the Middle East: Saudi Arabia, United Arab Emirates, Jordan, Qatar.

Cases have been reported in three European countries (United Kingdom, Germany, France) and Tunisia. But those cases had either traveled from the Middle East or in a few instances were infected through close contact with someone who recently returned from one of the above countries.

As of now, if you haven’t been to the Arabian Peninsula, your chance of a MERS infection is probably considerably less than 1%, or even zero, as all the cases have been linked to that region, says WHO spokesman Gregory Hartl.

What researchers don’t know is how many people may have had mild symptoms and never were reported. The more information scientists have, the more can be done to try to combat the disease.

I recently returned from the Middle East. What signs should I look for?

If you’ve traveled to the countries above and have cold-like symptoms which are getting worse, and you’re having increasing difficulty breathing and a fever, you may want to see a doctor. It’s important to tell your physician where you have been, so you can be tested for regular flu and other illnesses that can cause these symptoms as well as MERS-CoV.

The WHO describes the common symptoms as acute, serious respiratory illness with fever, cough, shortness of breath and breathing difficulties. According to Hartl, the real worry is that patients will develop pneumonia — most, although not all, of the cases have. Many have also had gastrointestinal problems including diarrhea.

What should I avoid?

The original source of the infection is still a mystery, so health officials cannot tell you what to avoid to prevent getting this coronavirus.

Researchers haven’t identified any animal that may be carrying the virus. Early on in the SARS outbreak, an animal called the civet cat was implicated — maybe unfairly, because bats were later implicated too.

It’s not known how the virus spreads between humans, be it droplets in the air from coughing or sneezing or touching contaminated surfaces, but WHO isn’t ruling out contact with surfaces as a possible mechanism of transmission.

It’s also not known how long the virus can live outside the body. The SARS virus was shown to live as long as four days. Other viruses, such as HIV, lose their ability to be infectious within hours.

How can I help my family?

While there’s no cure for MERS-CoV, there are things you can do to protect your loved ones — the same measures you would take to prevent spreading the flu or other viruses.

If you’ve recently returned from Middle East and aren’t feeling well, stay home and avoid contact with babies and people who may already be sick. Cover your mouth when you cough or sneeze (tissue, sleeve or elbow, not your hands) and wash your hands frequently.

There currently is no vaccine or treatment for MERS-CoV.

A lot has been learned about new coronaviruses over the past 10 years by studying the SARS virus because the National Institutes of Health have continued to support research on it, Denison says, adding that he’s hopeful that knowledge could be “potentially applied towards vaccines,” if MERS-CoV develops into a pandemic.


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Doctor raises money for obstetric fistula surgeries

— It’s a condition practically unheard of in the United States and most Western countries. But in a culture where a woman’s status and dignity is decided by her ability to provide a husband with multiple children, it can be a fate worse than death.

“Obstetric fistula” is a mouthful. But to these women, it’s much more than just a physical injury. They see themselves as the walking dead, says Dr. Justin Paluku Lussy, head of the department of obstetrics and gynecology at HEAL Africa Hospital in Goma, Democratic Republic of the Congo.

An obstetric fistula occurs when a woman withstands days of obstructed labor, when a baby’s head is constantly pushing against her pelvic bone during contractions — preventing blood flow and causing tissue to die.

This creates a hole, or a “fistula,” between a woman’s vagina and her bladder or rectum. Her baby is unlikely to survive. If the mother lives, she is unable to hold her urine and, in some cases, bowel content, Paluku Lussy says.

A woman with a fistula, who is perpetually leaking urine and sometimes feces, is often rejected by her husband and shunned by her village because of her foul smell and inability to bear more children.

“These women have so much shame and so much fear. They spend so much money on perfume trying to cover up the smell,” says Alison Heller, a doctorate student at Washington University in St. Louis who is leading a research study of 50 women in Niger awaiting fistula surgery. The women range in age from 15 to 70.

An estimated 20% of Paluku Lussy’s fistula patients report feeling ostracized by their communities, and divorce is common, says the doctor, who started his residency in 2001 at HEAL Africa, a 155-bed tertiary hospital with a fistula repair unit.

“People think fistula patients are witches and just have bad luck,” he says.

Although an estimated 2 million women in Asia and sub-Saharan Africa live with untreated obstetric fistula, according to the Fistula Foundation, it’s unlikely for these women to meet or hear of anyone else suffering from the same injuries, because of the lack of modern forms of communication and also the women’s reluctance to discuss the condition, Heller says.

In most cases, a woman with a fistula doesn’t know what a fistula is or that it’s treatable with surgery. And if she does, she is far from any hospital and doesn’t have money for — or access to — transportation, let alone the average $450 cost for repair surgery plus postoperative care.

One of the youngest in Heller’s study, a 15-year-old girl who was married off to her uncle at age 8, spent eight months selling bags of candied peanuts in order to raise enough money to pay for a taxi so she could get to a fistula center.

Such concerns are foreign concepts to most Westerners, says Dr. Lewis Wall, a professor of obstetrics and anthropology at Washington University in St. Louis. That’s because obstetric fistulas were largely eradicated from the United States by the 20th century, with strides in prenatal care and the use of cesarean section.

But pregnancy complications and childbirth are among the leading causes of death and disability for African women, Wall says.

Typical West African hospitals do not have the trained staff or resources to identify and treat fistulas, Heller says.

“Habsu,” one 32-year-old woman in Heller’s study, contracted a fistula in her ninth pregnancy and has had three previous surgeries, all of which have failed. During the latest pregnancy, she was in labor for several days at home in a rural village before receiving medical care. Like many African women, she was malnourished and her pelvic bones were too small for a natural birth.

After hours of unsuccessful labor and not knowing how to perform a cesarean, the doctors used a scalpel to sever the baby inside the woman’s birth passage. Over the next few days, the mother delivered her baby, piece by piece, Heller says.

Another West African woman in Heller’s study, “Amina,” also has a severe fistula but only leaks when she sits down. After the seated interview with Heller, Amina apologized, saying she would leak urine once she stood up.

“It was as if a gallon of water was thrown to the ground,” Heller says. “She was so ashamed.”

Many Africans — both educated and uneducated — believe there is no cure for fistulas, Paluku Lussy says. When he was in medical school at the University of Goma, he says, “they used to tell us not to even try to fix them.”

But, he says, that’s not the case. Fistulas can be repaired with delicate surgery, which has a fairly good success rate. However, surgeons must be well-trained in the principles of the operation, and good follow-up care is essential so the surgery won’t fail. Patients with more severe fistulas may need multiple surgeries.

Although he is a full-time professor, Wall last year opened the Danja Fistula Center in Niger, a 42-bed hospital specializing in fistula repair surgeries with an operating room, outpatient clinic and hostel facilities for about 100 women.

Since opening the fistula center, Wall estimates the facility has taken on 50 fistula cases per month.

But it’s very difficult to get trained staff to run a fistula hospital, because of the lack of available education in Africa, he says. Fistula centers rely on donations and cannot afford to hire American gynecologic surgeons.

But even they aren’t ideal candidates for the job — since they never see fistula in their own country, they have no experience with it, he says. It’s best to have the institution run by locals trained specifically in fistula repair surgery and care.

Those who want to help should focus on spreading the word — awareness is key, he says. Thursday is the first International Day to End Obstetric Fistula; the United Nations Population Fund will host a variety of events to raise awareness.

That’s true for Washington resident Olivia Bowen. She had never heard of obstetric fistula until she read a book featuring a detailed story of an African woman with the condition. Bowen was shocked at how affordable fistula repair surgery is, by Western standards.

Bowen started a fundraiser called “One Week to End Fistulas,” which raises money for repair surgeries for underprivileged women who otherwise lack access. She asks that participants practice yoga daily for a week and raise enough money for one woman to have fistula repair surgery.

“I’m not a runner. I do yoga. So it’s something that just came naturally to me,” Bowen says.

So far, participants have raised about $2,250, or enough to fund five surgeries.

Bowen, who is in the process of making the fundraiser a nonprofit organization, says she hopes to help women who have already developed fistula, while the bigger organizations tackle other issues such as poverty, maternal health and human rights. Ultimately, she says, fistula is not just a women’s issue; it’s a human issue.


™ & © 2013 Cable News Network, Inc., a Time Warner Company. All rights reserved.

Answers to your breast cancer questions

(CNN) — When Angelina Jolie revealed she’d had a double mastectomy, she probably had a pretty good idea that her bravery would empower other women to tell their breast cancer stories.

What she didn’t know was that one of these women co-anchors a national morning news show.

On May 14, when Zoraida Sambolin walked into work and heard Jolie’s news, she realized this was the right time to tell viewers that five weeks before, she’d been diagnosed with breast cancer and had decided to have a double mastectomy.

“Angelina Jolie chose to bear her soul in writing and I chose to follow her lead in front of all our viewers Tuesday,” she later wrote in an article on CNN.com. “I am not yet on the other side, but judging by all the e-mails I’ve received from survivors, I am headed to a place that is stronger, wiser and definitely more empowered.”

Sambolin, co-host of CNN’s “Early Start,” is grateful for all the love and support she’s received from CNN’s viewers and readers. Many asked questions about their own health or the health of someone they love. Sambolin asked me to help answer these questions.

I’m worried I might have breast cancer. What are the signs?

Breastcancer.org, the National Breast Cancer Foundation and the Mayo Clinic explain the signs and symptoms of breast cancer.

Angelina Jolie got a test to see if she carried a faulty breast cancer gene. Should I get that test?

Read this Empowered Patient column and this CNN article by Dr. Susan Domchek to help you decide. CNN’s iReporters have weighed in with their own decisions about breast cancer genetic testing, and this CNNMoney article discusses whether your insurance will cover genetic testing.

Like Angelina Jolie, I carry a faulty gene for breast cancer. Should I also get a double mastectomy?

Dr. Aaron Carroll writes on CNN.com about the risks and benefits of Jolie’s choice. For another woman’s perspective, read Allison Gilbert’s moving article on CNN.com.

My doctor thinks I might have breast cancer. What tests will she use to find out?

Susan G. Komen for the Cure and the American Cancer Society explain the tests doctors use to diagnose breast cancer.

I’ve had a biopsy and read my pathology report, but I don’t understand it. Can you help?

Breastcancer.org breaks down the information in a pathology report.

I was just diagnosed with breast cancer. What’s my next step?

My Breast Cancer Coach and Susan G. Komen can walk you through this new world you’ve entered.

I thought breast cancer was breast cancer. Now I’m learning I have a certain type of breast cancer. Help — I’m confused.

The Mayo Clinic explains the different types of breast cancer.

Sambolin has breast cancer and decided to get a double mastectomy. Actress Christina Applegate made that same choice. I have breast cancer — should I get a mastectomy?

There are a lot of treatment options for breast cancer, and it’s not always easy to decide which is best for you. Komen, the American Cancer Society, and the National Breast Cancer Foundation all have treatment guides.

If I get a mastectomy, how will surgeons give me new breasts?

This CNN.com article explains breast cancer reconstruction options.

Should I get involved in a breast cancer study?

The American Cancer Society has some guidance.

My cancer isn’t going away. What should I do?

The American Cancer Society has this advice for what to do if breast cancer doesn’t go away or if it returns.

I’d like to connect with other women with breast cancer. Where can I find them?

There are many forums and online communities for women who have breast cancer, such as Previvors and Survivors, the Association of Cancer Online Resources, and Breastcancer.org.


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