Living With LGMD

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Keisha Greaves

I have Limb-Girdle Muscular Dystrophy (MD); I was diagnosed at the age 24. Keisha Greaves, founder of  Girls Chronically Rock shares her story.

I was born and raised in Cambridge, MA and went to high school in Cambridge. I received my bachelor’s degree in Fashion Design and Merchandising and then furthered my education in getting my Master’s degree in Business.

When I first discovered my symptoms of my MD, it was crazy to me because I started to get symptoms around 2009, while in graduate school. I began to repeatedly fall, and my leg would just give out on me without notice. I would fall to the ground and not be able to pick myself back up, I would need assistance from someone to lift me up with all their might, because it was something I just wasn’t capable of doing on my own. I also began notice when I tried to reach for certain things in the kitchen cabinets or try to exercise I was unable to lift my right arm up all the way. I kind of just thought to myself maybe I need to go on a diet and lose weight, but in the back of my mind I knew it something more.

So I went to see an orthopedic, but I was told that this was more of a neuro-muscular issue, so I then went to see a Neurologist. Once I saw the Neurologist, she then tested me and gave me a muscle biopsy, MRI, an EMG and every other test you can think of. So after multiple tests, I was finally diagnosed with Limb-Girdle Muscular Dystrophy. Limb-Girdle is a form of MD that affects the limb of the shoulders all the way down to the legs, which progressively over time eventually gets worse.

The first thing I thought was how long am I going to live, will I be in a wheelchair soon, and what is my life going to be like from now on. I knew I had to be strong and continue to do what I have to do so I started doing some research on it and read what eating healthy and exercising would help. I joined weight watchers with my cousin, I lost over 36 pounds and I felt great. I’ve able to keep half the weight still off, and I am still determined to lose more.

They have multiple types of Limb-Girdle Muscular Dystrophy, and 5 years later my doctor’s are still trying to figure which type I have exactly. The only thing they know at this point is from the types I may have, can affect my heart which is why I often have to go get a echo-cardiogram test that tests my heart to make sure everything is ok.

Living with Limb-Girdle Muscular dystrophy is still new to me every day. I wake up every day not knowing how my legs are going to feel, or what pain I may have when leaving my house. I try to be very careful when walking because I don’t want to fall and because I won’t be able to pick myself back up. Although I’m on my feet a lot for work, after a certain amount of hours, my legs start to weaken. I am currently a visual merchandiser at different locations for a very popular clothing store. I enjoy my job because it keeps me and my legs active and I enjoy traveling to the different store locations, doing what I love and my part in the fashion industry.

I have the wonderful support from my family and friends but at the end of the day, they have NO IDEA what I go through on daily basis or what I’m feeling. I try to explain to them how my legs feel, but it’s just so hard to explain. I still go out and enjoy my life as normal, but sometimes I always have certain things in the back of my mind.

When going out, I find myself researching about where I am going first, like does this place have stairs? Does it have an elevator? Do they accommodate handicapped people? So all of these things I worry about when I go out, and my friends and family have no idea. Living with MD has made me realize how strong I am and knowing I have no choice but to deal with this. I sometimes get stares because people wonder what a young girl like me is doing either walking with a limp, with a cane, or parking in a handicap parking spot. But I don’t mind because they just don’t know me or know what I have. Although my MD has progressed over the years and getting worse, I have learned to accept it and make certain changes in to my life, such as now walking with a cane in order to keep my balance and helping me not to fall. At this point, I am just taking everything day by day and staying strong. But there is one thing I want people to know by reading this quote.

“There’s no “cure” or a pill will “fix it”, but at one point I thought it may help. And, I thought the same with therapy and food. But it’s my endless support from family and friend that helps. It is hardest thing that I have ever done, and I found myself much stronger for doing it. Never, ever, underestimate the power of your desire. If you want to live badly enough, you can live. The greater question, at least for me was: How do I decide I want to live? That is the question I’m still working on?”

girlschronicallyrock.com

This AI system predicts seizures an hour before they happen with 99.6% accuracy

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picture of a brain x-ray

A pair of researchers from the University of Louisiana at Lafayette have developed an artificial intelligence system that predicts epileptic seizures with 99.6 percent accuracy.

The World Health Organization estimates that between 4 and 10 in every 1,000 people suffer from epilepsy-related seizures. According to numerous studies, 70 percent of those afflicted have symptoms that can be mitigated with medication. The problem is that many patients are unable to tell when they enter the preictal stage (the period directly before a seizure occurs) when such intervention would be effective.

Professor Magdy Bayoumi and researcher Hisham Daoud, the duo who created the system at University of Louisiana at Lafayette, want to take the guesswork out of seizure prediction. According to the pair’s research paper:

We propose four deep learning based models for the purpose of early and accurate seizure prediction taking into account the real-time operation. The seizure prediction problem is formulated as a classification task between interictal and preictal brain states, in which a true alarm is considered when the preictal state is detected within the predetermined preictal period.

Predicting a seizure is no small feat, especially for AI. Machine learning systems essentially run on data; the more you feed them the better the training and results. Unfortunately the frequency, detection time before onset, duration, and relative intensity of a seizure can vary wildly from one subject to the next.

This means, unlike teaching an AI to recognize photos of cats by feeding it millions of cat images, you can’t use a general purpose training dataset to create a seizure-detection system for individual patients. The researchers instead use long-term records of a person’s cranial EEG scans to develop a sort of baseline for brain activity before, during, and after seizures.

Patient’s personal data is required to develop the training and prediction paradigm, but the results are nothing short of astounding. Bayoumi and Daoud report near perfect accuracy at 99.6 percent detection with a false detection rate of nearly zero.

This has the potential to dynamically improve the lives of the estimated 50 million people afflicted with epilepsy world-wide.

Continue on to The Next Web to read the complete article.

FDA approves new breakthrough therapy for cystic fibrosis

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trikafta package

The U.S. Food and Drug Administration (FDA) recently approved Trikafta (elexacaftor/ivacaftor/tezacaftor), the first triple combination therapy available to treat patients with the most common cystic fibrosis mutation. Trikafta is approved for patients 12 years and older with cystic fibrosis who have at least one F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which is estimated to represent 90% of the cystic fibrosis population.

“At the FDA, we’re consistently looking for ways to help speed the development of new therapies for complex diseases, while maintaining our high standards of review. Today’s landmark approval is a testament to these efforts, making a novel treatment available to most cystic fibrosis patients, including adolescents, who previously had no options and giving others in the cystic fibrosis community access to an additional effective therapy,” said acting FDA Commissioner Ned Sharpless, M.D. “In the past few years, we have seen remarkable breakthroughs in therapies to treat cystic fibrosis and improve patients’ quality of life, yet many subgroups of cystic fibrosis patients did not have approved treatment options. That’s why we used all available programs, including Priority Review, Fast Track, Breakthrough Therapy, and orphan drug designation, to help advance today’s approval in the most efficient manner possible, while also adhering to our high standards. The FDA remains committed to advancing novel treatment options for areas of unmet patient need, particularly for diseases affecting children.”

Cystic fibrosis, a rare, progressive, life-threatening disease, results in the formation of thick mucus that builds up in the lungs, digestive tract, and other parts of the body. It leads to severe respiratory and digestive problems as well as other complications such as infections and diabetes. Cystic fibrosis is caused by a defective protein that results from mutations in the CFTR gene. While there are approximately 2,000 known mutations of the CFTR gene, the most common mutation is the F508del mutation.

Trikafta is a combination of three drugs that target the defective CFTR protein. It helps the protein made by the CFTR gene mutation function more effectively. Currently available therapies that target the defective protein are treatment options for some patients with cystic fibrosis, but many patients have mutations that are ineligible for treatment. Trikafta is the first approved treatment that is effective for cystic fibrosis patients 12 years and older with at least one F508del mutation, which affects 90% of the population with cystic fibrosis or roughly 27,000 people in the United States.

Continue on to the FDA to read the complete article.

In Helping His Dad With Diabetes, Young Mexican Chemist Pioneers Healthy—and Cheap—Sugar Substitute

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Javier Larragoiti and teamin lab developing the cheap sugar substitute

When 18-year old Javier Larragoiti was told his father had been diagnosed with diabetes, the young man, who had just started studying chemical engineering at college in Mexico City, decided to dedicate his studies to finding a safe, sugar-alternative for his father.

“My dad tried to use stevia and sucralose, just hated the taste, and kept cheating on his diet,” Larragoiti told The Guardian. Stevia and sucralose are both popular sugar alternatives, and many reduced-sugar products available today contain one or the other.

With stevia and sucralose out of the picture, the young chemist needed to keep searching. He started dabbling with xylitol, a sweet-tasting alcohol found in birch wood but also in many fruits and vegetables. Xylitol is used in sugar-free products such as chewing gum and also in children’s medicine, but is toxic to dogs even in small amounts.

“It has so many good properties for human health, and the same flavor as sugar, but the problem was that producing it was so expensive,” said Larragoiti. “So I decided to start working on a cheaper process to make it accessible to everyone.”

Xylitol Made Cheaper

Corn is Mexico’s largest agricultural crop, and Javier has now patented a method of extracting xylitol from discarded corn cobs. Best of all, with 28 million metric tons of corn cobs generated every year in Mexico as waste, there’s no shortage of xylitol-generating fuel.

Simultaneously, Larragoiti hit on the idea of how to make xylitol less expensive, while inventing a way to reuse the 28 million tons of corn cobs, substantially upgrading the traditional means of disposal: burning them.

Especially in a pollution-heavy country like Mexico, reducing the amount of corn waste burned, would eliminate a portion of the carbon emissions.

His business, Xilinat, buys waste from 13 local farmers, producing 1 ton of the product each year. His invention was awarded a prestigious $310,000 Chivas Venture prize award, which will enable him to industrialize his operation and scale up production 10-fold, diverting another 10 tons of corn cob from the furnace.

Continue on to the Good News Network to read the complete article.

NFL Football Star Pays For 500 Mammograms to Honor His Mother

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DeAngelo Williams pictured with many women posing in pink t-shirts for the Breast Cancer Pink Camp

Former NFL running back DeAngelo Williams has paid for over 500 mammograms for women—because, to him, the issue is personal.

He always wore the color pink in his hair, which flowed out from his helmet, during his later years as a player for the Carolina Panthers and Pittsburgh Steelers.

“Pink is not a color—it’s a culture to me.”

He created the DeAngelo Williams Foundation in honor of his mother, Sandra Hill, who died of breast cancer in 2006. All four of her sisters then died from the same disease—all before the age of 50.

He originally chose to pay for 53 mammograms because his mom died at age 53. He called the project #53StrongforSandra.” Since then, they have paid for 500 mammogram screenings for under-insured women in four states—North Carolina, Pennsylvania, Tennessee, and Arkansas, all states he has football ties in.

Continue on to The Good News Network to read the complete article.

5 tips for starting a conversation about your mental health

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two friends taking about mental health

By Rebecca Ruiz

It wasn’t long ago that the stigma of talking about one’s mental health forced many people to stay silent. Now though, messages encouraging people to share their struggles and seek help are widespread, including on Instagram, in public service announcements, and in celebrity interviews. Even Burger King launched a campaign to raise awareness and mark last May’s Mental Health Awareness Month.

Yet it’s one thing to notice and appreciate this newfound acceptance and another to acknowledge to someone else that you’re experiencing a mental health condition or illness. People typically avoid disclosing that information for several reasons, including internalized stigma and shame, fear of rejection, worry about discrimination at work, and uncertainty about whether they need treatment.

Indeed, mental health experts say it’s critical for people to weigh their concerns and disclose their experiences with others if and when it feels necessary and right.

“It’s really on a need-to-know basis,” says Quinn Anderson, manager for the HelpLine operated by for the National Alliance on Mental Illness (NAMI). Run by staff and volunteers, the HelpLine is designed to answer callers’ questions about symptoms of mental health conditions, how to help family members get treatment, where to find local support groups and services, and more.

If you’ve decided it’s important to tell someone about your mental health, try following these tips so that you’re prepared to have the conversation — and have a plan for handling what may come next:

1. Weigh the pros and cons. 

Patrick Corrigan, a distinguished professor of psychology at the Illinois Institute of Technology, helped develop a program called Honest, Open, Proud that provides guidance for those who want to disclose a mental health condition. The first step in this process is considering the potential risks and benefits.

In Corrigan’s research on the positive aspects of “coming out,” he’s found that people who are fed up with having to keep a secret feel freer once they’ve shared what they’re experiencing. But that sense of liberation may be elusive if the other person in the conversation responds with shame or judgment.

For those who take the risk of telling a supervisor, the pay-off can be certain workplace accommodations, which employers are required to offer per the Americans with Disabilities Act. An employee with a psychiatric disability may receive a flexible schedule, sick leave, and a tailored break schedule, in addition to accommodations like work space with reduced exposure to noise, various types of equipment and technology, and modified job duties. Even though employers are not permitted to discriminate against workers based on a psychiatric disability, an employee may worry that disclosing a condition puts their job prospects or security at risk.

“We do not have an agenda to talk people into coming out,” says Corrigan, noting the potential downsides. “Once you’re out, it’s not easy to go back in.”

2. Arm yourself with information about your experiences or condition. 

When discussing a sensitive topic, you’re likely to have done some research in advance in order to feel confident. Talking about your mental health is no different. If you’ve been diagnosed by a medical professional, or simply noticed worrisome symptoms that seem associated with a mental health condition, familiarize yourself with the relevant language that can help you communicate what you’re experiencing to others.

Such education can inform your understanding of what you’re going through — as can learning about others’ experiences — and thereby reduce your own sense of shame or stigma.

3. Decide who needs to know and what you want from them. 

If you’re already seeing a mental health provider, that person may be able to help determine who — if anyone — you should tell. Anderson says a provider can help you develop a plan, and in some cases, offer to invite a loved one to a joint appointment so you’ll have backup and the therapist can explain your treatment.

When deciding on your own whether to disclose, consider if it’s important, or even critical, for certain people to know. While you might hope to explain recent behavior to a loved one, ask for support, or perhaps seek acceptance, telling someone who isn’t capable of recognizing your needs and reacting with compassion or empathy could be devastating.

Anderson says it’s also helpful to prepare responses if someone asks how they can help. Answering that question can be as simple as describing what it looks like when you’re really struggling, along with guidance about how they can best support you.

The Honest, Open, Proud programs sometimes recommends against telling people who are generally bigoted, people who use disrespectful language (think “crazies” or “wackos”), people who attribute social problems to mental illness, and people who oppose giving fair or new chances to those who’ve experienced a mental illness.

Before opening up about your mental health, be clear about why you’ve chosen to tell a certain person, what you hope to gain, and how you’ll proceed if they can’t emotionally handle the information.

4. Choose an ideal time to talk, and keep it simple. 

Dawn Brown, director of community engagement for NAMI, recommends choosing a time where you’re alone, relaxed, and have enough time to explore the subject.

“I wouldn’t wait ’till you have a fight with your spouse to bring it up,” she says.

Similarly, sticking to the basic facts of what you’ve experienced and why you’re sharing that information can provide necessary guardrails for the conversation. If you feel ready to delve deeper, consider how that might affect the discussion if the person you’re talking to isn’t prepared to do the same.

5. Seek additional support and resources. 

No matter how your conversation goes, it can be essential to seek additional support from groups and likeminded peers who will help you feel more empowered. Disclosing, whether to a medical professional or loved one, may be one step in a long recovery journey. NAMI provides resources like contact information for local support groups to those who call the HelpLine, and Honest, Open, Proud provides similar referrals at the program’s end.

Feeling connected to the right support can be particularly important for people who can’t find culturally competent mental health providers, or those whose family members and friends have vastly different views of mental health as a result of cultural attitudes or beliefs.

Anderson says it’s important to stay hopeful and remember that help is out there.

“There will be individuals who don’t get it, who will always have a discriminatory perspective, and individuals who don’t know but want to help, and then those who really get it,” she says.

Continue on to Mashable to read the complete article.

5 Ailments Chinese Medicine Formulas Can Help

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a picture of herbal medicines on a table with a cup of tea and napkins

MINNEAPOLIS, MINNESOTA – Traditional Chinese medicine has been practiced for thousands of years and is well respected worldwide. Out of that health and wellness field there has emerged the area of Chinese herbal formulas.

According to the National Institutes of Health, herbal medicines are a type of dietary supplement that people take to try and maintain or improve their health. One company, DAO Labs, has taken the art of Chinese herbal medicine and has created a line of safe and effective, easy-to-use formulas that help with a variety of health needs.

“Most people are familiar with the idea of Chinese medicine, but are not sure how to easily incorporate it into their life,” explains John G. McGarvey, co-founder and chief executive officer of DAO Labs, a company that makes Chinese herbal medicine formulas to help with a variety of health needs. “With our line of Chinese herbal medicine formulas, we have made making Chinese herbal medicine a simple part of your life. It’s like thousands of years of knowledge in every glass.”

There has been major growth in the Chinese herbal medicine market in recent years. Over half of all acupuncturists are now offering products. According to Medgadget, a company that reports on medical technology around the world, it’s estimated that the herbal medicine market will reach $111 billion by 2023. They further report that according to the World Health Organization, almost 80 percent of the population of many Asian and African countries depends on traditional medicine for primary health care. DAO Labs is helping to make Chinese herbal remedies easily accessible in America.

Here are 5 health needs where Chinese herbal medicine formulas by DAO Labs can help:

  • Digestive Support. Those who want to strengthen their digestive health may benefit from Digestive Harmony, an herbal medicine that offers soothing, yet powerful, solution for balancing one’s stomach, upgrading digestive health, and generally delivering gut happiness when other western options have fallen short. The formula has been designed to help with a bloating and ballooned belly, digestive harmony, a sideways stomach, and when digestive strength is needed fast.
  • Emotional & Mental Well-Being. Millions of people today are anxious and irritable. Emotional Balance medicine formula has been created to bring calmness and emotional clarity. The formula has been designed to add a subtle boost of energy, while calming irritability, and easing mental tension. Those who use Emotional Balance become happier, calmer, and well adjusted. It’s also an excellent formula for women during the PMS phase of their cycle.
  • Better Sleep. Inconsistent, low quality sleep can lead to a wide variety of health conditions. Millions of people who don’t get enough sleep each night suffer in a variety of ways. DAO Labs offers two sleep solutions for two different sleep needs. Physical Tranquility has been designed to help the restless and overheated sleeper. The herbal medicine formula will help people to fall asleep, as well as continue to sleep all night, and wake up with better mental clarity and acuity the next day. DAO also offers Mental Tranquility, which is for the stressed sleeper whose mind won’t turn off in the middle of the night and lays awake due to stress and anxiousness. Unlike other sleep supplements, DAO’s Sleep Series formulas don’t contain melatonin and are designed to help you stay asleep.
  • Menstrual Health. Women’s health needs are a primary reason women seek support from an acupuncturist or doctor of Chinese medicine. DAO’s Women’s Formula is used for women seeking to strengthen the regularity of the menstrual cycle, while also offering increased energy each month. In addition, DAO offers their Women’s Monthly Kit which combines two different formulas for different phases of their cycle, offering a month-long solution for menstrual support.
  • Boost Immunity. Some people seem more prone to getting sick than others. It’s important for those people to boost their immunity. The Immunity Support herbal powder is one of the strongest forms of immunity defense that has been used for over 750 years and remains of the most popular formulas across Asia still to this day. It’s great for cold and pollen season, interacting with large crowds, for teachers and parents, and when you feel there is something coming on.

“There is support for these important health needs, and we have used traditional Chinese medicine principals to address them,” added McGarvey. “We have made it simple, by creating the healing herbal formula. We have taken the ancient wisdom of Chinese medicine and put it in healing powders that are accessible to all.”

All DAO Labs herbal medicine formulas come in single-serve packets with enticing flavors. They are sustainable, have gone through a rigorous testing process, and are manufactured and tested in the US. Each serving is stirred into a glass of water to create a tasty and healthy beverage.

DAO Labs’ motto is that healing begins with nature. Their mission is to help people heal through natural remedies. As such, they are also committed to helping to protect and bring awareness to the environment, in an effort to help stop the illegal wildlife trade. The company is against sourcing materials that harm the environment or endangered species, and has teamed up with the organization WildAid, with 1 percent of all sales going to the organization that is fighting the illegal wildlife trade. To learn more about DAO Labs and their Chinese herbal medicine formulas, visit the site at: https://mydaolabs.com.

About DAO Labs 

DAO Labs has a mission of bringing the many benefits of traditional Chinese herbal medicine to today’s wellness explorer. Founded by a team of Chinese herbal medicine experts, the company offers a variety of formulas that help with a variety of conditions impacting health and wellbeing. Their herbal formulas aim to help balance the mind, body, and spirit. To learn more about DAO Labs, visit the site at: https://mydaolabs.com.

Instagram co-launches a mental health awareness campaign to help people find support

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Poster that says May is Mental Health Awareness Month

In honor of Mental Health Awareness Month, Instagram co-launched a powerful campaign to help raise awareness on social media.

The #RealConvo Campaign — spearheaded by both Instagram and the American Foundation for Suicide Prevention (AFSP,) an organization that helps those affected by suicide — encourages people to use the hashtag to share their own personal mental health experiences and speak more openly about their struggles.

On Thursday, the AFSP Instagram account introduced the campaign with the help of nine people who are challenging the idea that Instagram is exclusively a place for sharing positive moments, filtered photos, and superficial glimpses at seemingly-perfect lifestyles.

Each of the nine leaders, actresses, activists, entrepreneurs, writers, and more created a video in the hopes of inspiring others to use the platform to engage in authentic conversations around mental health.

Among the group of contributors is Sasha Pieterse, a 23-year-old actress best known for her role in the show, Pretty Little Liars. In her #RealConvo video, Pieterse explained how she often compared herself to other people’s Instagram posts, until one day she decided to let her guard down and share a not-so-glamorous glimpse at her reality.

“A while ago I wasn’t sure what was going on with my health so I put out a post that said ‘I’m under construction,'” she said. “I’m so glad I did because it was the first real convo that I had on Instagram and it was basically saying that nobody’s perfect, everybody goes through things in their life.”

Elyse Fox & Kelvin Hamilton — founders of @SadGirlsClub, a non-profit that aims to reduce stigma around mental health and provide mental health services to those who lack access to treatment, and @SadBoysOrg, a resource for men within the mental health community — also created a video. Together, they discussed the importance of being vulnerable and creating healthy dialogues around mental health disorders like depression.

Continue on to Mashable to read the complete article.

Teens praised for teaching boy with autism how to skateboard on his birthday: ‘It brought me to tears’

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Teens at skatepark showing an autistic five year old boy with his helmet on how to skateboard

A mother from South Brunswick, N.J. shared an emotional note on her community’s Facebook page after a recent experience with her son, 5-year-old Carter, at a skatepark.

Kristen Braconi took Carter, who is on the autism spectrum and has ADHD, and his behavioral therapist to the park to celebrate his fifth birthday, where a group of older kids noticed him playing on his scooter. The teens took it upon themselves to teach Carter how to skateboard.

“They were absolutely amazing with him and included him and were so beyond kind it brought me to tears,” the mother shared on Facebook, including a few videos from the day. “I caught a video of them singing [“Happy Birthday”] to my son and one of the kids gave him a mini skateboard and taught him how to use it. I can’t even begin to thank these kids for being so kind and showing him how wonderful people can be to complete strangers.”

“I wanted to recognize the kids and their parents because when you can show their parents how kind and respectful they are when [their parents] aren’t around you know you have done a great job!” Braconi told CNN. “They did so much more than they knew.”

Braconi told the outlet that the young teens didn’t know that Carter has autism and that their kindness and inclusion boosted the 5-year-old’s confidence.

Braconi and Carter left the park and returned with ice cream for the teenagers, but the video inspired the South Brunswick Police Department to try to track down the “superheroes” as well.

Continue on to Yahoo News to read the complete article.

Author Teams Up with Autism Society San Diego for National Autism Awareness Month

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Book Cover image of My Friend Max-A Story About Autism

April is National Autism Awareness Month, which has a mission of helping to increase the understanding and acceptance of those who are autistic. According to the Centers for Diseases Control and Prevention (CDC), 1 out of every 59 children has been identified with autism spectrum disorder (ASD). One author, Reena B. Patel, is on a mission to help children learn how to become friends with those who have ASD.

In an effort to help raise awareness and acceptance, she has teamed up with Autism Society San Diego and has written a new book, titled “My Friend Max: A Story about a Friend with Autism” (Kind Eye Publishing, 2019). “The chances are high that your child will be a classroom with a child who has ASD” explains Reena B. Patel, a parenting expert, licensed educational psychologist, and author. “It’s a great life skill for kids without ASD to learn how to interact with and develop friendships with those who do. That’s where my book comes in, because I provide the tools to help teach about the importance of inclusion and kindness to bridge that gap.”

Autism Spectrum Disorder, according to the CDC, is a developmental disability that can cause significant social, communication and behavioral challenges. Children who have ASD tend to have an impaired ability to interact socially with others. They also have a reduced motivation and a delay in skills for engaging others. They may not seem interested in their peers, or they may be interested in them and not know how to relate to them. Children who have ASD may engage in restricted, repetitive or sensory seeking behaviors, or may enjoy activities that seem unusual compared to their peers. Often times, those with autism want friends, but they simply don’t know how to go about interacting with them in an effective way in order to form a friendship.

Patel is an ASD specialist, and her book has been expertly written in a way that will help people learn about the importance of inclusion, how to interact and develop friendships with those who have autism spectrum disorder. The book focuses on teaching kindness, compassion, and provides effective tips on how to be friends with someone with autism. The book is geared for kids ages 3-10, and offers a helpful story that children can relate to, while also offering a concrete list of tips in the back for parents and educators.

“This is a book that should be in every classroom,” added Patel. “There’s a high prevalence that a child with ASD is in every classroom, and children and educators need tools to help them learn how to engage and understand and how to interact in a positive way to relate to that child. That’s exactly what my new book does. It’s important to note that individuals with ASD do want friendships and this book provides tools for anyone who may be around a child with ASD and teaches them how to initiate friendship with them.”

Throughout the month of April, Patel will be donating 20 percent of all book sales to the Autism Society San Diego. The organization was founded in 1966 and is on a mission to help improve the lives of all those affected by autism. They offer programs that serve the community in a variety of ways. “We are thrilled to partner with an author like Reena who is writing books for parents, teachers and children that bring people together and provide the tools to help teach kindness and compassion toward those with autism,” explains Amy Munera, president of Autism Society San Diego, who also has three autistic children.  “Hopefully her message is well received in schools around the country, which will help everyone who is touched by autism.”

Patel is the founder of AutiZm& More, and as a licensed educational psychologist and guidance counselor, she helps children and their families with the use of positive behavior support strategies across home, school, and community settings. She does workshops around California, and virtual workshops globally where she provides this information to health professionals, families, and educators. She is also the author of a book that helps children with anxiety coping strategies called “Winnie & Her Worries.” Both of her books are available on Amazon. To learn more or order the books, visit the website at reenabpatel.com

Based in the San Diego area, Reena B. Patel (LEP, BCBA) is a renowned parenting expert, guidance counselor, licensed educational psychologist, and board-certified behavior analyst. For more than 20 years, Patel has had the privilege of working with families and children, supporting all aspects of education and positive wellness. She works extensively with developing children as well as children with exceptional needs, supporting their academic, behavioral and social development.  She was recently nominated for San Diego Magazine’s “Woman of the Year.” To learn more about her books and services, visit the website at reenabpatel.com, and to get more parenting tips, follow her on Instagram @reenapatel.

Founded in 1966, Autism Society San Diego serves the community with helping those affected by autism. The organization is all run by volunteers, and serves as the voice of resource of the local autism community. Membership includes autistic individuals and their parents, friends, advocates, medical professionals, and educators through the San Diego area. They offer a wide variety of programs and services to the community, including summer camps, an adult summer program, AWARE, biannual family camp weekends, two monthly family recreational events, and seven monthly support and information groups, as well as a variety of special events throughout the year. They offer direct support and referrals via our office administrator, our website, and our social media channels. For more information visit: facebook.com/autismsocietysandiego/

Those who would like to donate to Autism Society San Diego can do so through the Coin Up app: coinupapp.com/

Sources:
Centers for Disease Control and Prevention. Data & Statistics on Autism Spectrum Disordercdc.gov/ncbddd/autism/data.html
Centers for Disease Control and Prevention.Autism Spectrum Disorder.cdc.gov/ncbddd/autism/index.html

Autism and Dental Sedation—What You Need to Know

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Child sitting in dental chair tightly gripping mother's hand

Dr. Greg Grillo (dentably.com)

Going to the dentist can be overwhelming for anyone. However, in patients with autism, the sensory elements of the dentist can make it much more difficult.

One way to help a patient relax during their appointment is with dental sedation, but it’s important to know the different types before choosing this for a patient. As a practicing dentist for 17 years, I know just how stressful this can be for parents, and how frightening the whole process can be for the child. That’s why I’ve compiled information about everything you need to know before choosing dental sedation for a patient or child with autism.

Choosing a Sedation Method

There are several other sedation methods that your dentist may offer. Talk to them about which method will be best for your child or loved one.

Here are the three most common sedation methods that are used for dental care:

Conscious Sedation: A minimal type of sedation, it allows the patient to maintain consciousness and control during the procedure. Children with autism have widely different responses to this type of sedation, so it’s important to monitor them throughout the procedure. It also has some potential health risks if done incorrectly, so only specially trained dentists should perform this type of sedation.

Deep Sedation: This is a bit more powerful than conscious sedation and may render the patient unable to respond or control certain reflexes. This is similar to conscious sedation but used when less lucidness is required from the patient or for more involved procedures.

General Anesthesia: What most people think of when picturing dental sedation, this type will render the patient unconscious and unable to respond or control their bodies during the procedure. This is a powerful sedation method, so is likely only to be used for major dental work, or if the patient has responded extremely poorly to other options.

Your dentist will give you which options are available based on the procedure and will typically urge you towards the least potent. This can help your child by maintaining the measure of control they have during the procedure, as well as making the recovery quicker and easier to understand. Dentists are also always happy to answer questions, if you have concerns over the procedure speak up.

Prepare for the Visit

The most important step to making any dental process go smoothly for an autistic child is to Child with Autism sits in dental chair and the dental assitant is pointing to the different lights and devicesproperly prepare them. Helping your child understand what to expect can ease feelings of anxiety and make it a bit easier to digest. Make sure to explain to them what’s going to happen, why it’s important, and emphasize any positive rewards to look forward to.

The Tell/Show/Do method is a great way to keep your child at ease through the whole procedure. Start by telling them what’s going to happen and what the dentists needs to do. Then show them with a brief demonstration how it’s done and the tool used for it. Finally, the procedure will be done. This method helps keep the child engaged and calm as they know exactly what is going to happen.

Good preparation is key, but what entails is going to largely depend on your child. Everyone with autism is a little bit different and has different reactions to stimuli and different ways they express their discomfort. Take some time pre-visit to discuss this with your dentist and they will be happy to work with you to make your child’s visit go as smoothly as possible.

Recovery

How long it takes to recover is largely based on the type of sedation used. Keep this in mind as it’s usually better to give your child a definite answer, 40 minutes for example instead of a while. This is important as the recovery process may be new for your child, and they will not be used to the effects that the sedative has on their bodies.

It’s also important to monitor them during the recovery process for any adverse side effects. In general, you’ll be asked to remain at the dentist until they are confident no such reaction will be experienced.

Making Your Dental Visit a Success

Overall, the key to a successful visit is to plan and prepare, and make sure your child understands what is about to happen. As a dentist, I always do my best to put the child at ease and explain everything I’m about to do, but the prep should begin at home. Remember that dental sedation can be beneficial for a patient to receive the care they need.

Children living with autism are capable of having great dental experiences with patience and hard work. Never give up on your child’s dental health and enjoy the learning process together.