Angleman Syndrome and Adulthood

Angelman syndrome is a genetic disorder that affects the nervous system. Characteristics include developmental delays, intellectual disabilities, epilepsy, short attention span, hyperactivity, hand flapping and speech impairments. It is a rare disorder that affects 1 in 12,000 to 20,000 a year. there are less than 200,000 cases a year and affects all ethnicities and sexes equally.

Typically, there is a severe developmental delay and learning disability as well as near absence of speech and ataxia including ataxia including jerky movements of the arms and legs. People with Angelman syndrome generally have a happy demeanor and an inappropriate laughter.

Life expectancy appears to be normal. As people with Angelman syndrome age, scoliosis tends to worsen and for many people born with epilepsy, there are cases where seizures stop, however, they tend to return as the person gets older.

 

Due to cognitive and medical needs, a person with Angelman syndrome will always require support. Most people with Angelman syndrome attend a day habilitation setting. Support should include

  • staff trained on identifying seizures and providing assistance
  • programs that support the person’s short attention span
  • evaluation for a communication device or a means to communicate
  • support for self-injurious behavior

The following are resources and articles on Angelman syndrome and adulthood

Angelman Syndrome and Obesity (Angelman Syndrome) A 2017 study reporting on a third of Angelman syndrome patients were overweight or obese.

Angelman Syndrome in Adults– (Angelman Syndrome News). An article that describes signs and symptoms of individuals with Angelman Syndrome as they approach adulthood

Anxiety in Angelman Syndrome (Angelman Syndrome News). A topic on anxiety which is commonly observed in individuals with Angelman syndrome including information on triggers and ways to manage anxiety.

AS in Adulthood (AngelmanUKorg). A website describing the transition to adulthood and issues affecting people with Angelman syndrome.

Dental Problems in Angelman Syndrome (Angelman Syndrome News). Information on how people with Angelman Syndrome may be affected and possible treatment plans.

Transitioning to Adulthood Checklist. Created by the Angelman Syndrome Foundation, provides a 4-page checklist resource for students preparing to transition out of school.

World Cerebral Palsy Day

Today is World Cerebral Palsy Day, not just a way to bring awareness, but to create a movement among people with cerebral palsy, their families and the organizations that support them.

Held in over 50 countries, World Cerebral Palsy (CP) Day is an opportunity for people to take action by creating a global movement for change.

What can you do?

The goal of World CP Day is to encourage people to take action in six-key areas:

  1. Public awareness- putting an end to ignorance and the stigma it can create.
  2. Civil rights- ensuring that government officials at the local, regional, and national level will take concrete action
  3. Medical/Therapeutic- ensuring the best information for diagnoses, prevention and treatment is available.
  4. Quality of Life- ensuring that people with cerebral palsy find enjoyment and fulfillment in life.
  5. Education- helping all educators provide an education to members of the cerebral palsy community
  6. Contribution- making sure each person has the ability to contribute to society.

Oh, and don’t forget to tweet using the hashtag #WorldCPDay

Resources

cp-poster-what-is
What is cerebral palsy?- Infographic

cp-poster-diagnosis
Cerebral Palsy Diagnosis and Treatment Infographic

20 Great Resources on Cystic Fibrosis

Infographic by IVS Solutions

Infographic by IVS Solutions

 

October is Cystic Fibrosis Awareness Month. According to the Center for Control Diseases (CDC), Cystic Fibrosis (CF) is a chronic, progressive and frequently fatal disease of the body’s mucus glands. CF primary affects the respiratory and digestive systems in children and young adults. In the United States, approximately 30,000  people are diagnosed with CF. 1 out of 3,200 Caucasian births and 1 out of 15,000 African American births.

Below are a number of resources on Cystic Fibrosis.

Medical Sites- The following sites contain information on symptoms, definition, causes, risk factors, test, diagnosis and treatment:

Kids Health
Mayo Clinic
Medicine Net
Medline Plus
Medscape
NIH (National Heart, Lungs and Blood Institute)
PubMed Health
Wikipedia

 

Organizations

Boomer Esiason Foundation-group of passionate, dedicated individuals who work every day to raise money, awareness, and support for the cystic fibrosis community.
Cystic Fibrosis Foundation-The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care.

 

Twitter Accounts to Follow

twitter

 

 

 

 

 

Cure Cystic Fibrosis
Cystic Fibrosis Kids
Cystic Fibrosis News
Cystic Fibrosis Teen
Cystic Fibrosis Trust
Cystic Fibrosis_ South Australia
Cystic Fibrosis_Western Australia
Medical News Today_ Cystic Fibrosis
Team Cystic Fibrosis

 

Obsessive Compulsive Disorder Resources

 

General Medical Definition

Mayo Clinic
Medline Plus
National Alliance on Mental Illness
National Institute of Mental Health
Wikipedia

Obsessive Compulsive Disorders in Children and Teens

International OCD Foundation- Children and Youth
Kids Health
DrugRehab.com
Massachusetts General Hospital
Medscape
Psych Center

Obsessive Compulsive Disorder and Autism

Autism Speak Blog
Pathfinders for Autism
Seattle Children’s

Organizations

Anxiety and Depression Association of America
International OCD Foundation

Down Syndrome Organizations

 The internet offers a number of website that provide resources on Down syndrome. Topics including family support groups, education, medical and advocacy. For additional information, click on the links below:

down syndrome ribbon

 

 

 

Band of Angels: http://www.bandofangels.com/-

Established in 1994, Band of Angels provides support for individuals with Down Syndrome and their families. The website offers links on Down Syndrome support groups and a litany of topics including, adoption, autism and education.

Down Syndrome International https://www.ds-int.org/

A U.K. based international organization comprising a membership of individuals and organizations from all over the world. Disseminates information on Down Syndrome including prenatal diagnosis, early intervention, education, medical, health, employment, aging and human rights. Down Syndrome International also promoted World Down Syndrome Day (March 21) as a day dedicated to people with Down Syndrome.

 

Global Down Syndrome http://www.globaldownsyndrome.org/

Provides fundraising, education and governmental advocacy for the Linda Crnic Institute for Down Syndrome. Resources available on the website include, information on research, medical care and facts on Down Syndrome.

 

 

International Down Syndrome Coalition: http://theidsc.org/

Dedicated to helping and advocating for individuals with Down syndrome from conception and throughout life. Offers support to parents who are new to the Down syndrome diagnosis by connecting parents to each other.

 

National Association for Down Syndrome http://www.nads.org/

NADS is the oldest organization in the United States serving individuals with Down syndrome and their families. Also provides families with information and resources that will enable them to access appropriate services and educates the public about Down syndrome.

 

National Down Syndrome Congress http://www.ndsccenter.org/

The purpose of the NDSC is to promote the interests of people with Down syndrome and their families through advocacy, public awareness, and information. When we empower individuals and families from all demographic backgrounds, we reshape the way people understand and experience Down syndrome.

National Down Syndrome Society http://www.ndss.org/

NDSS provides resources to new and expectant parents and offers a toll-free helpline and email services. NDSS also focuses on transitions , wellness and education