Tag Archives: Disability

Huntington’s Disease

Huntington’s disease (HD) is an inherited brain disorder that results in the progressive loss of both mental faculties and physical control. Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25 year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications.

Everyone has the HD gene but it is those individuals that inherit the expansion of the gene who will develop HD and perhaps pass it onto each of their children.

Presently, there is no cure. Although medications can relieve some symptoms, research has yet to find a means of slowing the deadly progression of HD.

Current estimates are that 1 in every 10,000 Americans has HD and more than 250,000 others are at-risk of having inherited it from a parent. Once thought a rare disease, HD is now considered one of the more common hereditary diseases.

Every person who inherits the expanded HD gene will eventually develop the disease.
Over time, HD affects the individual’s ability to reason, walk and speak

Symptoms Include:

  • Personality changes, mood swings and depression
  • Forgetfulness and impaired judgment
  • Unsteady gait and involuntary movements
  • Slurred speech and difficulty in swallowing

The Scope of HD
Approximately 30,000 Americans have HD, but the devastating effects of the disease touch many more. Within a family, multiple generations may have inherited the disease. Those at-risk may experience tremendous stress from the uncertainty and sense of responsibility. In the community, lack of knowledge about HD may keep friends and neighbors from offering social and emotional support to the family, fostering unnecessary isolation.

The Huntington’s Disease Society of America (HDSA) has a nationwide network that provides support and referrals for individuals with HD and their families.

Genetic Testing for HD
Individuals can be tested for the gene that causes HD. The test may be used to confirm a diagnosis of HD, but may also be used as a predictive test before symptoms arise. Some individuals at-risk for HD feel that it is important to know whether they carry the gene. Others ultimately choose not to be tested. While the actual procedure is simple, the decision to have the test is not. HDSA recommends that persons wishing to undergo presymptomatic testing for HD do so at one of our HDSA Centers of Excellence, or at a testing center with specific training in working with HD. A list of these testing centers is available from HDSA

HD affects both sexes and all races and ethnic groups around the world.
The Decision to test is highly personal and should never be rushed or forced.

Who is At-Risk?
Every child of a parent with HD has a  50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.

Genetic Information Nondiscrimination Act of 2008 (GINA)
The Genetic Information Nondiscrimination Act (GINA) protects people from discrimination by health insurers and employers on the basis of their DNA information. This federal law also enables individuals to take part in research studies without fear that their DNA information might be used against them by health insurers or in the workplace.

However, GINA protections do not extend to long term care, disability or life insurance policies. Anyone contemplating testing should first consider adding one or more of these types of policies before starting the testing process.

Advocacy
HDSA advocacy works to advance legislation and policy to improve the lives of HD families by raising awareness about HD in the U.S. Congress, by promoting legislation, policy and regulations that would help individuals in the HD community, by educating Federal agencies about HD, and by partnering and collaborating with national organizations that have common goals. Learn more at www.hdsa.org/advocacy.

Join us in the fight against HD
YOU can help HDSA in our efforts to end HD and provide resources for those who must face this disease daily. Both funds and volunteers are needed. Contact the HDSA National Office to find out how YOU can help.

HD does not skip generations; if one does not inherit the expanded gene, one cannot pass it on

An End To HD?
In 1993, researchers identified the gene that causes HD. Since then, research has moved quickly towards developing treatments and, ultimately, a cure. HDSA supports the goals of clinical and basic research at leading research facilities globally.

Clinical and observational trials are an important way you can help to sustain the momentum of HD research and move potential new therapies through the approval process. Visit the Research section of the HDSA website for more information and to find a trial in your area. There are opportunities for all HD family members – gene positive, at-risk, gene negative, and caregivers – to participate.

About HDSA
The Huntington’s Disease Society of America (HDSA) is the largest 501(C)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 250,000 at-risk in the United States.

Where to find help
You are not alone in facing HD. HDSA has developed a nationwide network that includes Chapters and Affiliates, HDSA Centers of Excellence, Support Groups, and Social Workers that are ready to assist you with referrals and resources in your area. To learn more, please visit www.hdsa.org or call 888-HDSA-506.

Research worldwide is working to unlock the mystery of HD and find a cure

National Stroke Awareness Month

What Is A Stroke?
A stroke is a “brain attack”. It can happen to anyone at any time. It occurs when blood flow to an area of brain is cut off. When this happens, brain cells are deprived of oxygen and begin to die. When brain cells die during a stroke, abilities controlled by that area of the brain such as memory and muscle control are lost.

How a person is affected by their stroke depends on where the stroke occurs in the brain and how much the brain is damaged. For example, someone who had a small stroke may only have minor problems such as temporary weakness of an arm or leg. People who have larger strokes may be permanently paralyzed on one side of their body or lose their ability to speak. Some people recover completely from strokes, but more than 2/3 of survivors will have some type of disability.

Stroke by the Numbers

  • Each year nearly 800,000 people experience a new or recurrent stroke.
  • A stroke happens every 40 seconds.
  • Stroke is the fifth leading cause of death in the U.S.
  • Every 4 minutes someone dies from stroke.
  • Up to 80 percent of strokes can be prevented.
  • Stroke is the leading cause of adult disability in the U.S.

Autism Spectrum Disorders

Autism spectrum disorders (ASDs) are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.

ASDs are “spectrum disorders” which means ASDs affect each person in different ways, and can range from very mild to severe. People with ASDs share some similar symptoms, such as problems with social interaction. But there are differences in when the symptoms start, how severe they are, and the exact nature of the symptoms.


Types of ASDs
There are three different types of ASDs:

  • Autistic Disorder (also called “classic” autism)
    This is what most people think of when hearing the word “autism.” People with autistic disorder usually have significant language delays, social and communication challenges, and unusual behaviors and interests. Many people with autistic disorder also have intellectual disability.
  • Asperger Syndrome
    People with Asperger syndrome usually have some milder symptoms of autistic disorder. They might have social challenges and unusual behaviors and interests. However, they typically do not have problems with language or intellectual disability.
  • Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS; also called “atypical autism”)
    People who meet some of the criteria for autistic disorder or Asperger syndrome, but not all, may be diagnosed with PDD-NOS. People with PDD-NOS usually have fewer and milder symptoms than those with autistic disorder. The symptoms might cause only social and communication challenges.


Signs and Symptoms
ASDs begin before the age of 3 and last throughout a person’s life, although symptoms may improve over time. Some children with an ASD show hints of future problems within the first few months of life. In others, symptoms might not show up until 24 months or later. Some children with an ASD seem to develop normally until around 18 to 24 months of age and then they stop gaining new skills, or they lose the skills they once had.

A person with an ASD might:

  • Not respond to their name by 12 months
  • Not point at objects to show interest (point at an airplane flying over) by 14 months
  • Not play “pretend” games (pretend to “feed” a doll) by 18 months
  • Avoid eye contact and want to be alone
  • Have trouble understanding other people’s feelings or talking about their own feelings
  • Have delayed speech and language skills
  • Repeat words or phrases over and over (echolalia)
  • Give unrelated answers to questions
  • Get upset by minor changes
  • Have obsessive interests
  • Flap their hands, rock their body, or spin in circles
  • Have unusual reactions to the way things sound, smell, taste, look, or feel


Diagnosis
Diagnosing ASDs can be difficult since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at the child’s behavior and development to make a diagnosis.

ASDs can sometimes be detected at 18 months or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable. However, many children do not receive a final diagnosis until much older. This delay means that children with an ASD might not get the help they need.


Treatment
There is currently no cure for ASDs. However, research shows that early intervention treatment services can greatly improve a child’s development. Early intervention services help children from birth to 3 years old (36 months) learn important skills. Services can include therapy to help the child talk, walk, and interact with others. Therefore, it is important to talk to your child’s doctor as soon as possible if you think your child has an ASD or other developmental problem.

Even if your child has not been diagnosed with an ASD, he or she may be eligible for early intervention treatment services. The Individuals with Disabilities Education Act (IDEA) says that children under the age of 3 years (36 months) who are at risk of having developmental delays may be eligible for services. These services are provided through an early intervention system in your state. Through this system, you can ask for an evaluation.

In addition, treatment for particular symptoms, such as speech therapy for language delays, often does not need to wait for a formal ASD diagnosis.

Learn about types of treatments »


Causes and Risk Factors
We do not know all of the causes of ASDs. However, we have learned that there are likely many causes for multiple types of ASDs. There may be many different factors that make a child more likely to have an ASD, including environmental, biologic and genetic factors.

  • Most scientists agree that genes are one of the risk factors that can make a person more likely to develop an ASD.
  • Children who have a sibling or parent with an ASD are at a higher risk of also having an ASD.
  • ASDs tend to occur more often in people who have certain other medical conditions. About 10% of children with an ASD have an identifiable genetic disorder, such as Fragile X syndrome, tuberous sclerosis, Down syndrome and other chromosomal disorders.
  • Some harmful drugs taken during pregnancy have been linked with a higher risk of ASDs, for example, the prescription drugs thalidomide and valproic acid.
  • We know that the once common belief that poor parenting practices cause ASDs is not true.
  • There is some evidence that the critical period for developing ASDs occurs before birth. However, concerns about vaccines and infections have led researchers to consider risk factors before and after birth.

ASDs are an urgent public health concern. Just like the many families affected in some way by ASDs, CDC wants to find out what causes the disorder. Understanding the risk factors that make a person more likely to develop an ASD will help us learn more about the causes. We are currently working on one of the largest U.S. studies to date, called Study to Explore Early Development (SEED). SEED is looking at many possible risk factors for ASDs, including genetic, environmental, pregnancy, and behavioral factors.


Who is Affected
ASDs occur in all racial, ethnic, and socioeconomic groups, but are almost five times more common among boys than among girls. CDC estimates that about 1 in 88 children has been identified with an autism spectrum disorder (ASD).

More people than ever before are being diagnosed with an ASD. It is unclear exactly how much of this increase is due to a broader definition of ASDs and better efforts in diagnosis. However, a true increase in the number of people with an ASD cannot be ruled out. We believe the increase in ASD diagnosis is likely due to a combination of these factors.

Within the past decade, CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network has been estimating the number of people with an ASD in the U.S. We have learned a lot about how many children in the U.S. have an ASD. It will be important to use the same methods to track how the number of people with an ASD is changing over time in order to learn more about the disorders.


If You’re Concerned
If you think your child might have an ASD or you think there could be a problem with the way your child plays, learns, speaks, or acts,contact your child’s doctor, and share your concerns.

If you or the doctor is still concerned, ask the doctor for a referral to a specialist who can do a more in-depth evaluation of your child. Specialists who can do a more in-depth evaluation and make a diagnosis include:

  • Developmental Pediatricians (doctors who have special training in child development and children with special needs)
  • Child Neurologists (doctors who work on the brain, spine, and nerves)
  • Child Psychologists or Psychiatrists (doctors who know about the human mind)

At the same time, call your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make this call.

Where to call for a free evaluation from the state depends on your child’s age:

  • If your child is not yet 3 years old, contact your local early intervention system.You can find the right contact information for your state by calling the National Dissemination Center for Children with Disabilities (NICHCY) at 1-800-695-0285.Or visit the NICHCY website. Once you find your state on this webpage, look for the heading “Programs for Infants and Toddlers with Disabilities: Ages Birth through 3″.
  • If your child is 3 years old or older, contact your local public school system.Even if your child is not yet old enough for kindergarten or enrolled in a public school, call your local elementary school or board of education and ask to speak with someone who can help you have your child evaluated.If you’re not sure who to contact, call the National Dissemination Center for Children with Disabilities at 1.800.695.0285 or visit the NICHCY website. Once you find your state on this webpage, look for the heading “Programs for Children with Disabilities: Ages 3 through 5″.

Research shows that early intervention services can greatly improve a child’s development. In order to make sure your child reaches his or her full potential, it is very important to get help for an ASD as soon as possible.

Certified Driver Rehabilitation Specialists

Getting on the road to independence can be a long and twisting journey, but there are individuals, businesses and organizations ready, willing and able to help make it a smooth ride. Working with a Certified Driver Rehabilitation Specialist (CDRS) and a Mobility Dealer is one of the first and most important steps to take when purchasing mobility equipment or a new or used handicap accessible vehicle. Below are just some of the ways these specialists can make it easier for you to get behind the wheel.

Assessing Your Needs
Before taking to the road, you must complete a driving evaluation to determine your abilities as a driver. A CDRS-conducted evaluation will not only asses your driving skills as a driver with a disability, but will also match you with the most appropriate and best solutions for your mobility needs.

Safety First
By ensuring your mobility needs are met, a driving evaluation from a CDRS can help ensure you’ll be safer while on the road. These comprehensively trained specialists work with Mobility Dealers that are extremely knowledgeable about mobility solutions, provide individual, in-person evaluations and with their support and guidance, you can feel confident knowing that your time behind the wheel will be as secure as possible.

Adapted Driving Programs
A number of organizations also offer Adapted Driving Programs designed to help drivers with disabilities feel confident behind the wheel. Under the guidance of a CDRS, drivers can get hands-on training on how to stay safe and in control on the road. Some programs, such as senior safety courses, even help individuals find the best driving routes to common destinations and assist in learning rules and regulations affecting their driving environments.

Local Heroes Contest! Enter To Win a Free Accessible Vehicle!

This is the 4th annual National Mobility Awareness Month. During this month NMEDA has an amazing promotion where they encourage people with disAbilities to embody the spirit of Life Moving Forward by raising awareness of the many life-changing mobility vehicle solutions available today.

NMEDA and their members are mobility advocates dedicated to changing the lives of those living with disAbilities by providing access to quality handicap accessible vehicles and adaptive equipment. Whether you are living with a disAbility or have dedicated your time to helping someone who is, they want to hear your story of perseverance and strength.

For your chance to win a FREE wheelchair accessible vehicle enter NMEDA’s contest by telling them what makes you (or your loved one) a Local Hero! You can enter here

This year they will be giving away 4 handicap accessible vehicles:

  • one to a caregiver
  • one to a senior (60+)
  • one that is battery powered (for in-town driving only)
  • one in the general category.

Over 18 million people in North America are living with restrictive mobility issues. This is your chance to change the lives of just a few of those triumphing in the face of adversity.