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Year of awareness

The season of deep tans, warm weather and hot sun lends itself to more outdoor activities, and inevitably, more skin bared. 
And while bottles of sunscreen are a staple in most beach bags, how well are we really protecting ourselves against the sun’s harmful UV rays? 
“It’s well documented that UVA and UVB cause changes in your skin that contribute to the development of skin cancer,” said Dr. Adrienne Haughton, a board certified dermatologist with Stony Brook Medicine. She added that with more UV exposure comes a greater risk for skin cancer. 
Robert Grippo, 71, of Holbrook, has experienced the pain of skin cancer twice, explaining that he was diagnosed with basal cell skin cancer “once in 2012 and then it came back in a different spot in 2013.” 
For Grippo, both cases were located around the nose area and required biopsies. 
“The skin around your nose is very sensitive and when that needle goes in, you feel it,” he said. “I don’t wish that on anyone.” 
And while people have started to be more proactive about protecting their skin from UV rays -- Haughton noted an increase in the use of rash guards, umbrellas and tents at the beach -- she said that an increased awareness is still key. 
For example, Haughton said clothing is not an effective form of protection as some might think. “A white T-shirt has an SPF of 4. So, if someone says, ‘Oh, I can go to the beach and wear a white shirt,’ that’s not enough.” 
To help protect against UV damage, Haughton offered three tips: 
- Seek shade 
- Avoid the peak hours of the sun, from 10 a.m. - 2 p.m. 
- Wear sunscreen every-single-day (and reapply every two hours) 
Wearing sunscreen every day is important, she said, because UVA is able to travel through window glass and despite what many may think, 80-percent of UVA penetrates the clouds on a cloudy day. 
However, summertime is not the only times when our skin is at risk. 
“If you’re skiing, the snow is a reflective surface just like the sand and just like the water, so when you’re all around any reflective surface, you’re increasing your risk of developing increased UV exposure,” Haughton said. 
For Grippo, his experiences have taught him one thing: protect your skin. 
“Always make sure you have a hat, use your sunblock, because to be honest with you, you really don’t want to go through those biopsies.”

Year of Awareness: UV safety

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Burgon Jensen, originally from Salt Lake City, Utah, is a 22-year old who has been staying on Long Island since February. 
But when she returns to her home state next month, where she’ll be attending college in the fall, Jensen will be taking a lot more with her than just memories of New York life. As a person who is deaf-blind, she’ll also carry with her invaluable skills and technologies learned here. 
“I feel like I’ve gained a lot of independence just being here,” Jensen said, “so I’ll be able to take that home and just use it in my community, school, home, wherever.” 
Long Island’s Helen Keller National Center in Sands Point, where Jensen has been staying, teaches vocational skills as well as independent living to deaf-blind, hard of hearing and low-vision individuals. 
This year, the theme for Helen Keller Deaf-Blind Awareness week, which was this week, touches on the importance of technology in the lives of deaf-blind individuals. 
A poster distributed nationally to promote awareness shows a grandmother texting her granddaughter, accompanied by the slogan, “She’s Deaf-Blind and holds the world in her hands…just like her loved ones.” 
Ryan Odland, 32, is the coordinator of adaptive technology and the NY deaf-blind equipment distribution program for the center, and is also a deaf, low-vision individual. 
The program provides low-income individuals with expensive adaptive technology like iPads, MacBook Pros, and cellphones that can help the deaf-blind, he said. 
“Deaf-blind individuals are able to connect with other people through these technologies,” he said. By providing technology and tailoring services to an individual’s needs, Odland said, they are simply “building the bridges” for the deaf-blind to walk upon. 
One of the devices distributed, the Focus 14, allows blind individuals to sync up wirelessly with an iPad or iPhone via Bluetooth and display the screen’s contents on a 14-cell Braille reader. 
Prepared with a Focus 14 and her iPad, Jensen happily agreed to demonstrate how the device works. 
A series of buttons allows Jensen to navigate through her home screen to apps and other iPad features without ever actually touching her device, popping up an ever-changing row of Braille that indicates where she is on the screen. 
And while her device does require a lot more “refreshing” than normal -- the Braille reader only loads 14 characters at a time -- Jensen is able to log on to Facebook and interact with her friends and family just like any other 22-year old. 
Previously, Jensen said, she used talking phones and voice over apps, but she wasn’t fond of those technologies. In fact, the lack of sound is something that she prefers. With the Braille display, she said, “I don’t have to listen in noisy places.” 
Odland said devices like Samsung phones and MacBook Pros can be used to assist deaf-blind (and low-vision) individuals as well through the use of magnified or “zoomed” text and color inversion. 
The inversion is key, he said, because the contrast of white font on a black background is much easier to read to a someone with low-vision. 
Deborah Harlin, 53, who is the program coordinator for adaptive technology at the center, said the importance of this year’s awareness campaign is letting people of varying abilities know about the wide array of services available to them. 
“There are programs, and there are services, and there are products out there that -- especially with technology -- that can level the playing field for people who are deaf-blind,” she said. 
The center distributes technology throughout the state, with 1,100 to 1,200 people receiving devices within the program’s first year alone. 
Giving a sense of normalcy, whether it be to write an email or send a resume, are things that these technologies not only make easier, but make possible.

Technology levels the field for NY's deaf-blind

Year of awareness: Technology levels the field for deaf-blind awareness week 

As a young elementary school teacher in her early 20s, Michele Iallonardi’s knowledge of autism was limited. 
“What I knew about autism back then was like, your kid seems fine and then all of a sudden, they have autism.” 
For Iallonardi, that limited understanding changed suddenly when her son Jackson was diagnosed with autism; he was just 2 years old. 
“At around 12 months, I brought him to have an evaluation,” she said, recalling her concern when her son would not respond to her. 
After what she described as a frustrating yearlong process including countless evaluations and therapy sessions, Iallonardi decided to look elsewhere for answers. 
“I pursued other opinions, and he was diagnosed with autism when he was a little over 2 years old,” she said. “And I wasn’t shocked, but I was devastated.” 
Iallonardi’s son is part of a growing population. While previous statistics from the Centers for Disease Control indicate that 1 in&nbsp; 88 children is diagnosed with autism, new numbers recently released show an uptick to 1 in every 68 children. 
Even so, some see a silver lining. 
Jennifer Keluskar, a clinical psychologist who works with special needs children, said as diagnoses and treatments evolve, so does the possibility of complete recoveries for many, if not all, of those who are diagnosed with autism. 
“Our hope is to get individuals with autism to the point that they’re functioning well in society,” she said, such as finding “appropriate employment” for their abilities and sustaining friendships and other relationships. 
A big part of the ability to achieve full recoveries, Keluskar said, is identifying the disorder as quickly as possible. “The earlier the autism is caught, the better the outcome is likely to be.” 
Ten years post-diagnosis, Iallonardi said her son’s life has seen some significant improvements since being diagnosed. Iallonardi, now a board member of the Nassau-Suffolk Autism Society of America, said it took years to find a school that supported Jackson’s needs, but doing so was a blessing. 
“Two years ago, we finally found a school that he loves, that we love, that’s perfect for him,” she said, adding that the Brookville Center for Children’s Services, which is a 40-minute bus ride from their Hauppauge home, allows him to participate in activities like art, music and yoga, all with the one-to-one support that he needs. 
But her family still faces challenges. 
She spoke about a time recently when Jackson got off his school bus and was upset but he was unable to tell his mother what was wrong. Iallonardi said it’s heartbreaking to comfort a 12-year-old the same way you would a baby. 
“I hug him, I rub his head, I rock him,” she said. “Those are the things that I can do to help my 12-year-old, so that’s heartbreaking.“ 
Keluskar said she thinks the biggest importance of Autism Awareness Month is raising understanding and acceptance of children with autism. 
“There are some people, for example, that still believe autism is the same as intellectual deficit -- or what we used to call mental retardation -- and that’s not true,” she said. 
For Iallonardi, the month takes something of a different meaning. 
“I think awareness is great, but, I feel what’s more important is action.” 
She said while the traditional awareness items like bumper stickers, pins and T-shirts are great, they don’t do enough to create an understanding about the hardships created by autism. 
“For autism awareness month, I encourage people to reach out to a family who has a child with autism, invite them over for dinner, invite them over for a playdate, offer to watch their kid or just be a companion to them or a friend to them.” 
To Iallonardi and her family, the gift of normalcy is the greatest one of all because “when you have a child with autism, your life can be very isolating.”

LI autistic boy's mom talks care, awareness

Year of Awareness: Autism

YOA Autism  cropped

When Robin D’Andrea woke up blind in her left eye just months after being diagnosed with multiple sclerosis, she thought she needed new contacts. 
Her doctor had failed to warn her about temporary blindness or any of the other serious and often concerning ways the disease could affect her body. 
“Nobody had ever told me that MS was a disease of the central nervous system, so everything could be affected,” she said at an event kicking off Multiple Sclerosis Awareness Month in Nassau County on March 5. 
Now, 17 years post-diagnosis, D’Andrea is an active member of the Long Island chapter of the National Multiple Sclerosis Society. &nbsp;After her eyesight was restored, D’Andrea, 42, said she, “began to do a lot of research about what I was living with.” 
“Once I felt comfortable that I knew what MS was, I decided to volunteer, become an advocate and help people living with MS to learn what it was,” she added. 
Multiple sclerosis is a disease that attacks the central nervous system. Because there is no known gene or environmental factor that causes the disease, the list of multiple sclerosis symptoms often differs widely from person to person. 
For D’Andrea, her list of symptoms is a long one. 
“I’ve lost my eyesight quite a few times. I have extreme fatigue where I can’t get out of bed; it’s kind of like having the flu everyday. I get pain, numbness, tingling; my whole left side of my body right now is on fire, and it’s been like that for about a year.” 
More than 2.3 million people are affected by MS worldwide, according to the National Multiple Sclerosis Society. The organization’s Long Island chapter reports about 42,000 people living with one of the four types of MS locally. 
Don Barbieri, 54, of New Hyde Park, also suffers from multiple sclerosis. Over the years, the disease began to attack Barbieri’s body until he became confined to a power wheelchair for mobility. 
"It affects different people in different ways and it’s unpredictable,” said Barbieri, who is now “fundamentally dependent” on others for the majority of his daily living. 
“Over time, with each flare, disability accrues -- you don’t quite return back to what was normal -- and over time, there is a build up in this disability." 
The disease manifests in four forms -- relapsing-remitting MS, secondary-progressive MS, primary-progressive MS and progressive-relapsing MS. Patients often progress through the different types of the disease over time, each with its own symptoms. 
Barbieri was initially diagnosed with relapsing-remitting MS, characterized by symptoms that come and go and typically get better with treatment. But it progressed to secondary-progressive MS, he said. 
Barbieri said medication is often helpful as “disease modifying therapies” that can reduce the number of flare ups and “stave off the cruel disability.” 
But diagnosis can often be a major obstacle to early intervention and treatment because “there’s no one gene that you can point to that’s going to be related to you getting MS,” Barbieri said. 
D’Andrea said it typically takes about two years for an official diagnosis as doctors troubleshoot various symptoms a person may be experiencing and rule out other possibilities. 
“You have to have had at least two symptoms that lasted for more than a day,” she said. “There’s something called clinically isolated syndrome, where somebody will have an MS-type symptom, but they’ll have nothing else to back that up, so they do a ‘wait-and-see.’” 
Barbieri said a lot of living with MS comes down to attitude. 
“I’m lucky I have good family, good support around me, I have a caregiver who is a wonderful guy and, you know, you keep smiling and stay as happy as you can, and keep going, you know?” 
While March is National Multiple Sclerosis Awareness month, D’Andrea said the MS society’s fundraising and awareness campaigns run throughout much of the year. 
For D’Andrea, educating the public is one of the most important battles in fighting the “misunderstood” disease. 
“Just educating people and getting them to realize, ‘Okay, this is what MS is’ ... is the most important part of awareness."

LIers talk about their battles with MS

Year of awareness: Multiple sclerosis

ms awareness - cropped

Kristina Saffran said she was diagnosed with anorexia nervosa at the age of 10; Liana Rosenman at age 12. 
They are part of a growing -- and startling -- statistic. The number of children under the age of 12 to be hospitalized for eating disorders has increased by 119 percent between 1999 and 2006, according to the latest information available from the National Eating Disorders Association. 
After meeting in treatment, Saffran and Rosenman founded the LI-based project HEAL (Help to Eat, Accept and Live), a nonprofit that provides financial assistance to those who suffer from an eating disorder but can’t afford treatment, and to raise awareness. 
Based on their own experiences and the knowledge they've gained in creating the organization, they put a special focus on young people, hoping to dispel a "glamorization" of eating disorders that exists within that generation. “While media doesn’t cause eating disorders, it does exacerbate that this thin ideal is what you need to be,” Saffran said. 
And while the number of children affected by eating disorders have dramatically risen, they’re hardly the only age group suffering. The National Eating Disorders Association says that in the United States, 20 million women and 10 million men suffer from a “clinically significant” eating disorder at some time in their life. 
Saffran said awareness of eating disorders is important because knowledge about a disorder can help someone recover or even recognize they have it. She said some people suffering from a disorder don’t even realize their habits are a problem. 
“The scary thing is, you don’t realize in most cases that it’s really become a problem until after you’ve crossed that line and it spirals very, very quickly,” Saffran said. 
In fact, Saffran said, for many, “it’s a very thin line between normal healthy dieting ... and extreme eating disorder.” 
Rosenman said her disorder took the form of dispassion for things like sports, which previously she loved. "I was really only participating in the sports to lose weight," she said, adding that she also withdrew from friends. 
“For about 5 years, I was just a very quiet girl who didn’t want to participate in anything," she said. 
Following what she thought was a full recovery, Saffran said she relapsed when she reached her teens and was hospitalized four times in her freshman year of high school. 
Saffran said it was “hard to stand up and say, ‘I want to recover,' but with treatment and support, both she and Rosenman made full recoveries. It's an accomplishment they strive to help others achieve. 
Rosenman said a large part of stopping eating disorders is joining together in the effort. “I think that we do need to work as a society to raise awareness to eating disorders,” she said. 
Saffran said the most important message to anyone suffering is one of hope. 
“We believe that making a full recovery is 100 percent possible," she said. 
*National Eating Disorder Awareness Week is Feb. 23, 2014 - March 1, 2014 
By the numbers: Eating Disorders 
1 in 10: The number of men and women who receive treatment for eating disorders 
50: The percentage of girls who use unhealthy weight control methods like skipping meals, fasting, vomiting, etc. 
81: The percentage of 10-year-olds who are afraid of being fat 
30,000: The cost, per month, to care for a patient with an eating disorder 
10,000,000: The number of men who suffer from eating disorders 
<div>
 20,000,000: The number of women who suffer from eating disorders
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 &nbsp;
</div> 
<div>
 SOURCES: National Eating Disorder Association and National Association of Anorexia Nervosa and Associated Disorders
</div> 
<div>
 &nbsp;
</div> 
<div>
 About this project: In 2014, The Daily Apple will feature one health-related cause each month to spotlight the need for awareness of the illness or disorder and the people who are helping making strides to overcome it.
</div>

LI teens beat anorexia, work to aid others

Year of Awareness: Eating Disorders

HLHEAL22

Sprinkled throughout the calendar year, awareness months aim to bring a wider knowledge and understanding of various causes, from cancers to eating disorders and beyond. But as these months come and go, many of us put our colored ribbons away, ending our awareness participation until the following year. 
 For the Daily Apple, 2014 is to be the Year of Awareness.&nbsp; That is, we will spotlight different causes as their months arise in the calendar. Of course, not every cause can be featured; but we hope that by the end of the year, our readers will have a greater sense of the struggles and amazing stories of the people touched by these campaigns. 
 A common unifier for all humans, blood is the one thing that keeps each and every one of us alive. It’s only fitting then, that our first month, January, is volunteer blood donor month. 
 Whether you’ve donated before, or never been able to, how many people know what happens to a unit of blood, platelets and plasma after they leave a donor’s body? 
 To answer this question, and maybe even inspire a few of you to donate the next time you have the opportunity, we followed the path a pint of blood takes from the time of donation to when it’s ready to be distributed. 
 “When you donate blood, you get more than juice and cookies,” said Harvey Schaffler at the New York Blood Center’s Melville location last week. 
 Schaffler, executive director for donor marketing at New York Blood Center, explained the importance for blood donations saying, “In the New York area, over 2,000 people require a blood transfusion every day.” 
 “The only source of human blood are volunteer blood donors,” he continued, adding, “There is no substitute.” 
 For some, donating blood has a personal importance, a feeling that Huntington resident Joanne Schenendorf explained. “I have twin grandsons that were preemies, and one of them needed a transfusion.” 
 A donor before the birth of her grandsons, Schenendorf quickly recognized the impact the event had on her and her family. “It made the family that much more appreciative of how important it is to donate.” 
 Jody Goklevent, of Massapequa Park, said her reason for donating is a simple: “It’s a good thing to do.” More than that though, she explained, “If I were ever in an accident or something were to happen to me, I would want to know there was blood available to help me.” 
 While donors munch on the juice and cookies that Schaffler mentioned post-donation, their freshly collected blood is just beginning its journey to recipients across the area. 
 After donation, blood travels to one of the New York Blood Center’s two processing facilities where it is broken down into components. 
 "On average here in Westbury, we process 400 to 600 whole blood donations a day," said Jamie Kowalski-Corio, the assistant manager of Component Labs for New York Blood Center in Westbury. &nbsp; 
 From there, the blood is scanned, grouped together by weight, spun in a centrifuge and then separated by parts. "The plasma is frozen and the red cells are stored in a 1-degree to 6-degree refrigerator," Kowalski-Corio explained. 
 "It’s usually about a 48-hour process from the time we receive the whole blood donation until we’re releasing it to our hospital services department to distribute to the hospitals," she said. 
 Whether, like Schenendorf and Goklevent, you donate because it’s “a good thing to do,” or because you love the juice and cookies, Schaffler asked, “What else can you do in an hour that can save a life?” 
 Blood donation by the numbers: 
 3: The number of lives one pint of blood can save. 
 5: The number of days platelets are viable for after donation. 
 7: The percentage of the U.S. population that has O-negative blood, a type that can be universally donated to people of all blood types. 
 10: The number of pints of blood the average adult has in their body. Only about 1 pint of that is given during donation. 
 38: The percent of the U.S. population that is eligible to donate, though less than 10 percent actually do every year. 
 42: The number of days red blood cells are viable for after donation. 
 56: The number of days a healthy adult must wait before donating again. 
 41,000: The number of blood donations that are needed nationally each day. 
 4,500,000: The number of Americans that receive blood transfusions each year. 
 Sources: <a href="http://nybloodcenter.org/donate-blood/blood-facts/">New York Blood Center</a> and <a href="http://www.redcrossblood.org/learn-about-blood/blood-facts-and-statistics">The Red Cross</a>

Where does donated blood go? Follow step-by-step

A year of awareness: Donating blood

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