Category Archives: Awareness

International Dravet Syndrome Awareness Month

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Date: June 23, 2022

Epilepsy is the 4th most common neurological disorder in the United States. With children, around 400,000 have epilepsy and most are able to control their seizures and lead normal lives. Dravet Syndrome is a rare form, of epilepsy found in children. Symptoms include, developmental delays, sleeping conditions, and chronic infections. Here are 20 facts you should know about Davet Syndrome.

20facts.dravet

  • Charlotte Dravet first described severe myoclonic epilepsy of infancy in France, 1978.
  • The name was later changed in 1989.
  • It is also called Severe Myoclonic Epilepsy of Infancy (SMEI)
  • It is a rare genetic disorder affecting 1 in every 20,000-40,000 children.
  • It appears during the first year of life.
  • Developmental disabilities and abnormal EEGs are often not evident until the second of third year of life.
  • Seizures are often fever related.
  • It is rare to develop beyond the age of 5.
  • Children often experience poor development of language and motor skills.
  • Is caused by defects in a gene in 79% of cases.
  • Affects 2-5% of children in North America
  • It is induced by prolonged exposure to warm weather
  • It is associated with sleep disorder including insomnia.
  • Seizures are frequently resistant to treatment.
  • There is a higher risk of Sudden Unexplained Death in Epilepsy (SUDEP) (15-20%)
  • The onset of signs and symptoms is around 6 months old
  • Children diagnosed with Dravet Syndrome have a 85% chance of survival.
  • Development is typically normal.
  • Episodes may be frequent and prolonged.

 

Tourette Syndrome Awareness Month

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Date: May 15- June 15, 2022

June is Tourette Syndrome Awareness Month.

What is Tourette Syndrome?

According to the Tourette Association of America, tics are involuntary, repetitive movement and vocalizations. They are the defining feature of a group of childhood-onset, neurodevelopmental conditions known collectively as Tic disorders and individually as Tourette Syndrome.

Tics are common in childhood. The estimated prevalence of Tourette Syndrome disorder range from 3 to 8 per, 1,000 in school-aged children. Males are more commonly affected than females. Some people may have tic-free periods of weeks to months.

There are three types:
  1. Motor tics cause a movement including eye blinking, facial grimacing, jaw movements, and head bobbing
  2. Vocal/phonic tics produce a sound including throat clearing, grunting, hooting, and shouting
  3. Provisional tic disorders involve a person who experiences involuntary motor and/or verbal tics for one year.
Signs and Symptoms:

Tic Disorders:

  • eye blinking
  • coughing
  • throat clearing
  • sniffing
  • facial movement
  • shoulder shrugging

Vocal Tics:

  • barking or yelping
  • grunting
  • repeating what someone else says
  • shouting
  • sniffing
  • swearing
Co-Occurring Disorders Include:
  • Attention Deficit/Hyperactivity Disorder (ADHD)
  • Obsessive -Compulsive Disorder
  • Learning difficulties
  • Behavior problems
  • Anxiety
  • Mood problems
  • Sleeping issues
  • Social skills and deficits

Resources:

Ways to raise awareness: Participate in Awareness Month – Tourette Association of America

Williams Syndrome Awareness Month

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Date: May 1- May 30, 2022

May is Williams Syndrome Awareness Month.

What is Williams Syndrome?

Williams Syndrome also known as Williams-Beuren syndrome was discovered in 1961 by J.C.P. Williams, a Cardiologist from New Zealand. Williams Syndrome is a rare disorder with a prevalence of in 7,500 to 20,000 caused by the deletion of genetic material from chromosome 7. Williams syndrome symptoms include heart problems, low birth weight, l problems and developmental delays. 75 are diagnosed with mile to moderate intellectual disabilities or a learning disability.

Facts and Statistics
  • It is a genetic condition that is present a birth.
  • It is a developmental disorder
  • Tend to have a mild or moderate intellectual disability.
  • It is also known as Beuren Syndrome and Williams-Beuren Syndrome.
  • The symptoms were first described by John C.P. Williams in 1961.
  • A year later, German Physician, A.J. Beuren described three new incidents of patients with similar facial features.
  • It is caused by the spontaneous deletion of 26-28 genes on Chromosome #7
  • The deletion is caused by either the sperm or the egg.
  • The deletion is present at the time of conception
  • The most common symptoms of Williams Syndrome includes unusual facial features and heart defects.
  • The diagnosis is typically confirmed after identifying facial features and genetic testing.
  • An individual with Williams Syndrome has a 50% chance of passing the disorder on to their children.
  • Williams Syndrome affects 1 in 10,000 people worldwide.
  • An estimated 20,000 to 30,000 people in the United States are affected.
  • It occurs in both males and females equally
  • It is found in every culture
  • Individuals with Williams Syndrome tend to be overly friendly.
  • People with Williams Syndrome often have difficulty with visual-spatial tasks
  • Congenital heart defects (CHD) occur in approximately 75 percent of children
  • By the age of 30, the majority of individuals with Williams Syndrome have pre-diabetes or diabetes.

Physical characteristics include:

Musculoskeletal

Almond shape eyes

Broad forehead

long neck

Longer upper lip

Puffiness around the eyes

sloping shoulders

Small chin

Small upturned nose

Wide mouth

Learning Characteristics

During Williams Syndrome Awareness Month, You can create a fundraising page or team

Download awareness event planning tools

purchase an awareness t-shirt

For more information: Awareness Month | Williams Syndrome Association (williams-syndrome.org)

Autism Acceptance Month

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Date: April 1- April 30, 2022

What is a Autism Spectrum Disorder?

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental disorder that impacts social, speech, behavioral and motor skills. It is a spectrum disorder meaning it varies from person to person. No two people have the same symptoms. It is estimated that 1% of the population is diagnosed with autism.

Prevalence

About 1 in 40 children has been identified with autism spectrum disorder (ASD).

1 in 42 boys are diagnosed with autism

1 in 189 girls are diagnosed with autism

100 individuals are diagnosed everyday

ASD is reported to occur in all racial, ethnic and socioeconomic groups.

ASD is 4 times more common among boys than girls.

Studies in Asia, Europe, and North American have idendified individuals with ASD  with an average prevalence of between 1% and 2%.

About 1 in 6 children diagnosed with autism also have a developmental disability.

Parents who have a child with ASD have a 2%-18% chance of having a second child diagnosed with autism

Almost half (44%) of children diagnosed with ASD has average to above average intellectual ability.

ASD commonly co-occurs with other developmental, psychiatric, neurological, chromosomal and genetic diagnoses.

Stimming

  • It is also prevalent among people on the autism spectrum.
  • In fact in many cases, it is part of the diagnosis due to the repetition of stimming.
  • Stimming is often used as a means to self-regulate, self-calm and for self-expression.
  • The movements are repetitive and are used to self-stimulate the 7 senses.
  • It is often described as a repetitive motor behavior that can disrupt academic and social and other activities.
  • One of the theories behind stimming is that beta-endorphrins are released in the brain casuing an euphoric feeling which is generally a response to pain.
  • Stimming behavior. based for self-soothing and to help a child or an adult regain emotional balance.
  • Sensory Overload. Too much sensory information can lead to stress, anxiety and eventually a meltdown.

Wandering Statistics

  • Nearly half of children with autism engage in wandering behavior
  • Increased risks are associated with autism severity
  • More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
  • Half of families report they have never received advice or guidance about elopement from a professional
  • Accidental drowning accounts for 71% of lethal outcomes, followed by traffic injuries at 18%
  • Other dangers include dehydration; heat stroke; hypothermia; falls; physical restraint; encounters with strangers
  • Accidental drowning accounted for 91% total U.S. deaths reported in children with autism due to wandering.

 

Resources

Download Factsheet

Autism and Visual Impairment

Epilepsy and Autism

Self-Regulation and Autism

World Asthma Day

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Date May 5, 2022

World Asthma Day is organized by the Global Initiative for Asthma is held each May to raise awareness of asthma worldwide.

World Health Organization (WHO) recognizes that asthma is of major public health importance. According to WHO, it is estimated that more than 339 million people had asthma globally and there were 417,918 deaths due to asthma at the global level.

Asthma Facts

  • Each child reacts differently to the factors that may trigger asthma
  • There is no cure for asthma but can be managed with proper prevention pf asthma attacks an treatment
  • More Americans than ever before have asthma. It is one of the country’s most common and costly diseases.
  • Asthma is more common in boys than girls.
  • It is the leading chronic disease in children
  • Asthma is more common in adult women than adult men
  • African Americans are five times more likely than white Americans to visit the emergency department
  • On the average, ten Americans die from asthma each day
  • When a child has asthma, their lungs are extra sensitive to certain stimuli or “triggers” which range from viral infections to allergies

Purple Day for Epilepsy

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Date: March 26, 2022

March 26 is Purple Day is an international grassroots efforts dedicated to increasing awareness about epilepsy worldwide. People om countries around the world wear purple and host events in support of epilepsy.

Epilepsy is a neurological disorder which causes seizures through electrical impulses occurring in the brain. It is the fourth most common neurological disorder. Epilepsy affects 50 million people worldwide. In the U.S., 1 out of 26 people are affected.

A person is considered to have epilepsy if they meet any of the following conditions:

  1. At least two unprovoked seizures occurring greater than 24 hours apart.
  2. One unprovoked seizure and after two unprovoked seizures occurring over the next 10 years.
  3. Diagnosis of an epilepsy syndrome.
Seizures

A seizure is caused by a burst of abnormal activity in the brain. With a seizure, a person has change in awareness, behavior, body movement or sensation. A seizure can last from a few seconds to a few minutes. Seizures can take on many different forms and affect people in different ways.

Auras

Auras are often describes as a warning before the occurrence of a seizure. Not everyone experiences an aura. Some have described it as a change in feeling, sensation, thought or behaviors. this may include:

  • An overpowering smell.
  • Nausea or indigestion.
  • A rising/sinking feeling in the stomach.
  • a sleepy/dreamy feeling.
Types of Seizures

Generalized Tonic Clonic Seizures. Involves the entire brain. May also be referred to as a grand mal seizure. This occurs when abnormal electrical activity affects all or most of the brain. often the body will stiffen and then the person will lose consciousness and then the body will shake due to uncontrollable muscle contractions.

Absence Seizure– A brief loss of consciousness or awareness. It generally last only seconds and mainly occurs in children. Signs may include a blank stare, lip smacking and repeated blinking, chewing or hand movement.

Focal Seizures– The burst of electrical activity is contain in one part of the brain. In a simple focal seizure, you may have muscular jerks or strange sensations in one arm or leg. The person does not lose consciousness or awareness.

Causes
  • brain trauma
  • genetics
  • stroke
  • tumors
  • brain infections
  • head injury.
Risk Factors
  • Babies who are born small for their age
  • Babies who have seizures in the first month of life
  • Cerebral Palsy
  • Autism Spectrum Disorders
  • Conditions with intellectual and developmental disabilities
  • Family history of epilepsy (febrile)

Prevalence:

  • More people live with epilepsy than autism, spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy combined.
  • You can’t swallow your tongue during a seizure. It is physically impossible.
  • You should never force something into the mouth of someone having a seizure.
  • Don’t restrain someone having a seizure.
  • Epilepsy is not contagious .
  • Anyone can develop epilepsy.
  • Epilepsy is not rare.
  • 1 in 26 Americans will develop epilepsy in their lifetime.4An estimated 3 million Americans and 65 million people worldwide live with epilepsy.
  • In 2/3 of patients diagnosed with epilepsy, the cause is unknown.
  • Up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures). (SUDEP) and other seizure-related causes such as drowning and other accidents.
  • SUDEP accounts for 34% of all sudden deaths in children.
  • Epilepsy costs the U.S. approximately 15.5 billion each year.
  • A seizure is a transient disruption of brain function due to abnormal and excessive electrical discharges in brain cells.
  • Epilepsy is a disease of the brain that predisposes a person to excessive electrical discharges in the brain cell.
  • It is diagnosed when 2 or more unprovoked seizures have occurred.
  • It must be at least 2 unprovoked seizures more than 24 hours apart.
  • About 14% have simple partial seizures.
  • 36% have complex partial seizures.
  • 5% have tonic-clonic seizures.
  • Seizures can be caused by head trauma, stokes, brain tumor and a brain infection.
  • Causes are unknown in 60 to 70% of cases.
  • The prevalence is 1% of the U.S. population.
  • Approximately 2.2 to 3 million in the U.S. have seizures.
  • It affects all ages, socioeconomic and racial groups.
  • Incidents are higher in children and older adults.
  • Seizures can range from momentarily blanks to loss of awareness
  • Almost 150,000 people in the U.S. develop epilepsy every year.
  • No gender is likely to develop than others.
  • 1/3 of individuals with autism spectrum disorders also have epilepsy.
  • The prevalence of epilepsy in people with an intellectual disability is higher than the general population.

Website: Purple Day – Supporting Epilepsy Around The World!

Resources

Epilepsy and Autism: What You Need To Know – Special Needs Resource and Training Blog

Intellectual Disabilities And Epilepsy – Special Needs Resource and Training Blog

 

Trisomy Awareness Month

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Date: March 1- March 31, 2022

March is Trisomy Awareness Month.

Prevalence:

  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%
  • Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year
  • Down syndrome occurs in people of all races and economic levels
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
  • A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
  • People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses

The incidence of Down syndrome is between I in 1000 to 1 in 1,100 live birth worldwide.

  • Each year, approximately 3,000 to 5,000 children are born with Down syndrome.
  • 60-80% of children with Down syndrome having hearing issues
  • 40-45% of children with Down syndrome have congenital heart disease
Life Expectancy
  • The life expectancy increased slowly from 1900 to 1960 (by 89%) but rapidly grew from 1960 to 2007 (456%)
Life Expectancy by Race
  • Whites with Down syndrome in the United States had a median death at the age of 50 in 1997 compared to 25 years for African Americans and 11 for people of other races

Resources

10 Important Facts On Trisomy 18

Down Syndrome Timeline

Mosaic Down Syndrome

National Developmental Disabilities Awareness Month

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March is National Developmental Disabilities Awareness Month. The purpose is to help raise awareness about people with intellectual and developmental disabilities.

Developmental disability is a diverse group of chronic conditions that are due to mental or physical impairments before the age of 22. A developmental disability can occur before, during or after birth. Common well-known developmental disabilities include autism, Down syndrome, cerebral palsy and Fragile X syndrome. Here are some facts and statistics on developmental disabilities.

  • Developmental Disability is a severe, long-term disability that affect cognitive ability, physical functioning or both.
  • 1 in 6 or about 15% of children aged 3 through 17 have one or more developmental disabilities.
  • Between 2014 and 2016 the prevalence of developmental disability among kids ages 3 to 17 increased from 5.76 percent to 6.99 percent.
  • Prevalence of autism increased 289.5%
  • Prevalence of ADHD increased 33.0 %
  • Males have a higher prevalence of ADHD, autism, learning disabilities, stuttering and other developmental disabilities.
  • Children from families with incomes below the federal poverty level had a higher prevalence of developmental disabilities.
  • 10% of Americans have a family member with an intellectual disability.
  • Intellectual disabilities are 25 times more common than blindness.
  • Every year 125,000 children are born with an intellectual disability
  • Approximately 85% of the intellectual disability is in the mild category.
  • About 10% of the intellectual disability is considered moderate
  • About 3-4% of the intellectual disability population is severe.
  • Only 1-2% is classified as profound.

Resources

Website: Developmental Disabilities Awareness Month Archives – The Arc

What You Should Know About GERD and Developmental Disabilities – Special Needs Resource and Training Blog

National Cerebral Palsy Awareness Month

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Date: March 1- March 31, 2022

March is National Cerebral Palsy Awareness Month and is used to bring awareness and to educate the general public.

What is Cerebral Palsy?

Cerebral Palsy is a collection of motor disorders resulting from damage to the brain that can occur before, during and after birth. Congenital cerebral palsy indicates that a person developed cerebral palsy at birth which is the case of the majority of people with cerebral palsy. According to the Centers for Disease Control and Prevention (CDC), Cerebral Palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood. It is estimated that an average of 1 in 345 children in the U.S. have cerebral palsy. For many years, it was thought cerebral palsy was due to lack of oxygen. Studies show this only accounts for 19% of all cases.

Prevalence and Characteristics
  • Around 764,000 people in the United states have at least one symptom of cerebral palsy
  • Around 10,000 babies are born each year with cerebral palsy
  • Boys are diagnosed more often than girls
  • Cerebral palsy is the mot commonly diagnosed childhood motor disability in the United States
  • Over 77% of children with cerebral palsy have the spastic form
  • More than 50% of all children with cerebral palsy can walk independently
  • African American children with cerebral palsy are 1.7 times more likely to need assistance with walking or be unable to walk at all
  • Around 41% of babies and children with cerebral palsy will have limited abilities in crawling, walking and running.
  • Around 41% children with cerebral palsy in the United states have some form of a cognitive disorder
  • Behavior problems are common in children with cerebral palsy including social skills and anger issues.
  • Seizures are a common associate disorder of cerebral palsy and can range from mild to extreme severe.
  • There is no known cure
What Causes Cerebral Palsy?

Studies show that about 10 to 20 percent of children with cerebral palsy acquire the disorder after birth. This includes through infections, jaundice, RH incompatibility and severe oxygen shortage in the brain.

Types of Cerebral Palsy

Ataxic- indicates the muscle tone is too low or too loose

  • affects 5 to 10 percent of people with cerebral palsy
  • movements are unsteady and shaking
  • have difficulty making quick movements

Spastic- refers to the inability of  muscle to relax

  • is the most common type of cerebral palsy
  • 70-80% of people have spastic cerebral palsy
  • will have difficulty moving from one position to another

Athetoid-uncontrolled twisting movements

  • Affects 10 to 20% of people with cerebral palsy
  • often have difficulty holding themselves in an upright position
  • muscles move involuntarily causing limbs to twitch

Classifications

Hemiplegia- The inability to move the arm and leg on one side of the body.

Diplegia-The inability to move either both arms or both legs.

Quadriplegia- A type of cerebral palsy that affects all limbs on both sides of the body

Monoplegia- A type of cerebral palsy that affects only one limb.

Resources

 

International Wheelchair Day

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Date: March 1, 2022

International Wheelchair Day is held annually on March 1 to honor the positive impact wheelchair users accomplish everyday. The purpose is to bring awareness to the millions of people who need wheelchair.

International Wheelchair Day was founded by Steve Wilkinson who was born with Spina Bifida.

Website: International Wheelchair Day | An annual celebration of the Wheelchair