Tag Archives: down syndrome

Developmental Disability Awareness Ribbons

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Awareness ribbons in recent history began when Penney Laingen used the ribbon as a symbol of vigilance (from the song, Tie a Ribbon Around the Ole Oak Tree) when she tied a yellow ribbon around the oak tree in her front yard when her husband, Bruce Laingen. a top-ranking U.S. diplomat was a hostage during the Iran hostage crisis in 1979. This was followed by the red ribbon during the AIDS epidemic and the pink ribbon bringing awareness to breast cancer.

Ribbons have long been used as a way to bring awareness and raise consciousness for a cause. Ribbons and disability awareness have evolved from bringing awareness to various disability topics such as sensitivity, inclusion and advocacy to including various formats. People are using social media as a means to promote awareness including using hashtags and setting up Facebook pages specifically for disability awareness.

Disability awareness and acceptance is being done through the use of awareness ribbons.

The Ribbons below focus on ribbons that bring awareness to developmental disability and special needs issues.  including individuals with neurodevelopmental and intellectual disabilities. Awareness is only a part of educating and training people on disability awareness. Training activities should also include acceptance and understanding.

Awareness Ribbons

Autism Spectrum Disorder- The Autism ribbon continues to evolve overtime. The puzzle piece was first used in 1963 by a parent and board member of the National Autistic Society in London indicating the puzzling, confusing nature of autism. In 1999, the puzzle piece ribbon was adopted as the universal sign of autism awareness by the Autism Society reflecting the complexity of the autism spectrum. Overtime, the both the puzzle and ribbon have become a symbol for seeing autism as something that is puzzling an needs to be fixed rather than acceptance. A more positive symbol includes the infinity loop used as a symbol for acceptance rather than awareness.

Angelman Syndrome- Blue

Apraxia- Light Blue

Attention Deficit Hyperactivity (ADHD)- Orange

Cerebral Palsy- Green

Cri Du Chat- Blue

Developmental Disabilities- Silver or light blue

Di George Syndrome- Teal

Down Syndrome- Blue and Yellow

Dravet Syndrome- Purple

Duchenne Muscular Dystrophy- Light Green

Epilepsy- Purple

Fetal Alcohol Syndrome Disorder- Silver and Blue

Fragile X Syndrome- Teal

Hydrocephalus- Light Blue

Prader Willi- Orange

Rare Disease- Zebra Stripe

Rett Syndrome- Purple

Sensory Processing Disorder- Blue or Orange

Sickle Cell Anemia- Burgundy

Spina Bifida- Yellow

Spinal Cord Injuries- Green

Tourette Syndrome- Teal

Trisomy 18- Light Blue

Turner Syndrome Purple Butterfly

Williams Syndrome- Burgundy

 

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Burgundy Awareness Ribbon

  • Sickle Cell Anemia
  • Williams Syndrome

 

Blue Awareness Ribbon

  • Angelman Syndrome
  • Cri Du Chat

Green Awareness Ribbon

  • Cerebral Palsy
  • Spinal Cord Injuries

Light Blue Awareness Ribbon

  • Apraxia
  • Developmental Disabilities
  • Hydrocephalus
  • Intellectual Disabilities
  • Trisomy 18

Orange Awareness Ribbon

  • Attention Deficit Hyperactivity Disorder (ADHD)
  • Prader Willi Syndrome
  • Sensory Processing Disorder

Teal Awareness Ribbon

  • Fragile X Syndrome
  • DiGeorge Syndrome
  • Tourettte Syndrome

 

 

 

Purple Awareness Ribbon

  • Dravet Syndrome
  • Epilepsy
  • Rett Syndrome
  • Turner Syndrome

Blue and Yellow Awareness Ribbon

  • Down Syndrome

Light Green Awareness Ribbon

  • Duchenne Muscular Dystrophy

 

Silver and Blue Awareness Ribbon

  • Fetal Alcohol Syndrome Disorder

Yellow Awareness Ribbon

  • Spina Bifida

Observance and Awareness Month

February

Turner Syndrome Awareness

March

Trisomy18

Kidney Awareness

Multiple Sclerosis

Cerebral Palsy

Developmental Disabilities

April

Autism

Auditory Processing Disorder

May

Apraxia

Cri Du Chat

Cystic Fibrosis

Global Developmental Delay

Williams Syndrome

June

Aphasia

CDKL5

Dravet Syndrome Day

Helen Keller- Deaf- Blind

July

Fragile X Syndrome

National Craniofacial Awareness and Prevention Month

September

Duchenne Muscular Dystrophy

Fetal Alcohol

Hydrocephalus

Sickle Cell Anemia

Spinal Cord Injuries

October

ADD/ADHD

Down Syndrome

Dyslexia

Rett Syndrome

Sensory Processing Disorder

November

22Q

Epilepsy

Lennox-Gastaut

December

West Syndrome (Infantile Spasm)

Updated on 7/15/24

Mosaic Down Syndrome

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There are 3 types of Down syndrome disorders with mosaic being the rarest. 90 to 95% of people with Down syndrome have trisomy for chromosome 21. According to researchers, 2-4% of people with Down syndrome have mosaicism.

What is Down Syndrome?

Down Syndrome  is a chromosomal disorder caused by an extra cell division that results in an extra 21st chromosome. This causes developmental delays both intellectually and physically. It is the most commonly occurring chromosomal condition and is estimated that 1 in every 700 babies in the United States are born with Down syndrome.

Mosaicism

Mosaicism or Mosaic Down syndrome develops when there is a mixture of cells meaning some cells contain the extra copy of chromosome 21 while other cells are typical chromosomes.

Prevalence
  • It is estimated that 2 or 3 children diagnosed as having Down syndrome carry the mosaic form.
  • Mosaicism for trisomy 21 was first reported in 1961 by CM Clark, JH Edwards and V. Smallpeice who describe an 11-month old female with good muscle tone, no congenital heart defects, meeting developmental miles yet with eyes similar to babies born with Down syndrome.
  • By 1964, 24 cases of mosaicism were now on record.
  • Little is still known on the similarities and differences between trisomy 21 and mosaic trisomy.
Signs and Symptoms

People with Mosaic Down symptoms often have the same health issues as individuals with trisomy but less severe. This includes:

  • sleep apnea
  • heart issues
  • visual impairments
  • immune disorders
Physical Characteristics

People with Mosaicism vary in physical appearance depending on the number of trisomy cells.

People with Mosaic Down syndrome typically have a higher IQ and are more likely to hold a fulltime job compared to people with trisomy 21 Down syndrome.

Screening Test

Screening test are usually done as routine test during pregnancy health visits.

Updated 7/3/24

National Birth Defects Prevention Month

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Start: January 1-January 30, 2024

January is National Birth Defects Prevention Month and is a nationwide effort to raise awareness of birth defects and the impact on families.

Birth defects can be diagnosed during pregnancy or after the baby is born. Birth defects occur when there are structural changes during the first three months of pregnancy affecting one or more parts of the body. About 1 in 33 babies (3%) are born in the United States is born with a birth defect. Birth defects are also the leading cause of infant deaths accounting for 20% of all infant deaths.

Types of birth defects include:

  • Anencephaly
  • Spina Bifida
  • Cleft Lip/Cleft Palate
  • Down Syndrome
  • Microcephaly
  • Muscular Dystrophy
  • Edwards Syndrome
  • Patau Syndrome

Not all birth defects are preventable however, the following are steps you can take for a healthy baby:

  • Try to prevent infections.
  • Wash your hands regularly.
  • Get 400 units of folic acid every day.
  • See a healthcare professional on a regular basis.

Updated 12/29/23

Is Williams Syndrome the Same as Down Syndrome?

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Published by: Medicinet.com

What is Williams syndrome?

Williams syndrome is a genetic disorder that affects approximately one in 25,000 births. The syndrome is named for Dr. J.C.P. Williams, who first diagnosed the condition. He saw a pattern in children at his hospital receiving treatment for cardiovascular problems. These children shared traits like similar facial features and an unusually friendly and outgoing demeanor.

Williams syndrome is also called:

  • Beuren Syndrome
  • Early Hypercalcemia Syndrome with Elfin Facies
  • Elfin Facies with Hypercalcemia
    • Hypercalcemia-Supravalvar Aortic Stenosis
    • WBS
    • Williams-Beuren Syndrome
    • WMS

    What is down syndrome?

    Of all chromosomal conditions, Down syndrome is the most common with one in 700 babies diagnosed with Down syndrome. Most people are born with

    46 chromosomes, but those with Down syndrome have an extra copy of chromosome 2.

    While the physical features and behaviors are very similar, there are three different types of Down syndrome: Click here to read the rest of the story.

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

Genetic Syndromes Associated with Congenital Heart Disease

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Introduction

Studies show that approximately 30% of congenital heart disease is related to genetic syndromes. awareness of these genetic syndromes can help in the planning of the individual’s care management.

The following are common genetic syndromes associated with congenital heart disease:

Down Syndrome. Studies show that congenital heart disease occurs in 40-50% of individuals with Down syndrome specifically atrioventricular canal defects. It is suggested that echocardiograms should be performed at diagnosis.

Turner Syndrome. Heart issues are common in 24-45% of girls diagnosed with Turner syndrome. The most common abnormalities are bicuspid aortic valve (16%). The researcher suggests that all Turner patients should have a baseline cardiologic exam.

22q11.2 deletion Syndrome.  In most cases, congenital heart defects is the cause of death. It is recommended that both an EKG and and EEG be done at the time of the diagnosis with ongoing follow-up.

Williams Syndrome. Approximately 75-80% of individuals born with Williams syndrome have a cardiac malformation. Hypertension is often developed in about 50% of people with Williams syndrome and continues to increase overtime.

Reference

Ko, JM (2015). Genetic Syndromes Associated with Congenital Heart Disease.  The Korean Society of Cardiology. 45 (5) 357-361