October is Down Syndrome Awareness Month

October is Down Syndrome Awareness Month, a chance to spread awareness.  During the month of October, we celebrate people with Down syndrome and make people aware of our abilities and accomplishments.  It’s not about celebrating disabilities, it’s about celebrating abilities. 
We can learn all about our history. We have a right to speak out about what it’s like to have Down syndrome and to learn the real story of people like us.  People with Down syndrome and their loved ones can spread awareness about Down syndrome by going to their local Buddy Walk® and we can speak out about our needs.  This is how we advocate. Our parents can teach us about education and how to advocate for ourselves – and give us love, support and encouragement.
Remember that this is a very important month – we have to spread awareness about Down syndrome and learn more about ourselves.   
- See more at: http://www.ndss.org/About-NDSS/Our-Team/Ambassadors/Goodwill-Ambassador/Straight-Talk-with-Chris-Burke/Down-Syndrome-Awareness-Month/#sthash.FFMCmj5E.dpuf

Down Syndrome Awareness Month is chance to spread awareness, advocacy and inclusion throughout the community.  During the month of October, we celebrate individuals with Down syndrome and make people aware of their abilities and accomplishments.

It’s not about celebrating disabilities; it’s about celebrating abilities. 

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What Is Down Syndrome?

 

Down syndrome (or Down's syndrome) is a chromosomal disorder caused by an error in cell division that results in an extra 21st chromosome. The condition leads to impairments in both cognitive ability and physical growth that range from mild to moderate developmental disabilities. Through a series of screenings and tests, Down syndrome can be detected before and after a baby is born.

The only factor known to affect the probability of having a baby with Down syndrome is maternal age. That is, less than one in 1,000 pregnancies for mothers less than 30 years of age results in a baby with Down syndrome. For mothers who are 44 years of age, about 1 in 35 pregnancies results in a baby with Down syndrome. Because younger women generally have more children, about 75 - 80% of children with Down syndrome are born to younger women. 

What causes Down syndrome?

Down syndrome occurs because of an abnormality characterized by an extra copy of genetic material on all or part of the 21st chromosome. Every cell in the body contains genes that are grouped along chromosomes in the cell's nucleus or center. There are normally 46 chromosomes in each cell, 23 inherited from your mother and 23 from your father. When some or all of a person's cells have an extra full or partial copy of chromosome 21, the result is Down syndrome.

The most common form of Down syndrome is known as Trisomy 21, a condition where individuals have 47 chromosomes in each cell instead of 46. This is caused by an error in cell division called nondisjunction, which leaves a sperm or egg cell with an extra copy of chromosome 21 before or at conception. Trisomy 21 accounts for 95% of Down syndrome cases, with 88% originating from nondisjunction of the mother's egg cell.

The remaining 5% of Down syndrome cases are due to conditions called mosaicism and translocation. Mosaic Down syndrome results when some cells in the body are normal while others have Trisomy 21. Robertsonian translocation occurs when part of chromosome 21 breaks off during cell division and attaches to another chromosome (usually chromosome 14). The presence of this extra part of chromosome 21 causes Down some syndrome characteristics. Although a person with a translocation may appear physically normal, he or she has a greater risk of producing a child with an extra 21st chromosome.

2013 Boston Abilities Expo

Come See VMi New England at the Boston Abilities Expo this Weekend!

The Boston Convention & Exhibition Center, Hall C - Booth 237 

 

 

Are you in the greater Boston area and want to know more about Wheelchair Vans and Mobility equipment? If yes, come to the Boston Abilities Expo this Weekend (September 20-22 2013) to see us, alongside VMI, to help spread awareness!!

We, along side VMI, are leaders in the manufacturing and distribution of wheelchair accessible vans worldwide. From minivans to full-size conversions, VMI continues to lead through innovation, stability, superior customer service and dedication to quality - much like us. Together we provide a service that is not found with any other conversion manufacturer. 

For more information come and see us this weekend where we will have all leading wheelchair vans on display! We hope to see you there!

Facts You Might Not Know About Spinal Cord Injuries

People with SCI can’t sweat

The spinal cord may be the organ that helps the body feel and move, but it also operates your sweat. Becoming hotter and hotter is what some people with higher spinal cord injuries have to go through until they finally cool off their body from the outside, either by dumping cold water on their skin or basking in the AC. Paraplegics however can usually sweat. Not being able to sweat applies generally to quads.

82% are men

Out of everyone on the planet with a spinal cord injury, 82% are male. That’s quite the disparity between men vs. women and most think feel it’s because men are bigger risk-takers than women. It’s hard to argue with that. Motor vehicle crashes, sports injuries, falls, men find themselves in these situations a lot more often.

Before the 1940s, the life expectancy was two years

There may not be a cure for spinal injuries yet, but scientists have come a long way in improving long-term prospects for people with spinal cord injuries. Prospects before the 1940s were not good. It was before antibiotic use began to be widespread, which mean most died before the two year mark from slow deaths related to untreatable infections; bladder, blood and skin. Paralyzed WWII veterans are some of the first people in human history to move onto full lives post-injury.

Less sensation, less body hair

One of the few bonuses of having a spinal cord injury (if you could call it that) is less body hair. Researchers have recently discovered that body hair grows better when it’s getting feedback from the brain. They’re not sure why, but it’s a phenomenon that’s been observed in most people with a spinal cord injury.

Some people can’t cough

Some people who are quadriplegic may be able to emit a tiny cough, but that’s about as fierce of a cough most of us can do. Reason why – spinal cord injuries don’t just effect the legs and arms, they can affect the chest wall muscles; everything becomes paralyzed below the level of injury. This is why respiratory failure remains the number one cause of death among people with higher spinal cord injuries. Coughing up phlegm is critical when fighting off colds, but the good news – cough-assist devices and techniques like these.

They pee through their belly buttons

Everyone thinks they know the going-to-the-bathroom secret (catheters). But there’s one big secret mainstream society has no idea is possible—a surgery that allows you to pee through the belly button. That’s right, a hole is put in the belly button, with a new urinary conduit to boot. All you need to do is insert in a catheter, put a drainage cup between your legs, and you’re good to go. Doctor Mitrofanoff invented this fascinating surgery.

Their legs can still move

Mainstream society thinks paralysis equates to the legs being absolutely frozen in time—but this is not the case. Some people’s paralyzed legs can move and shake a lot on their own; anything causing pain below the level of injury can cause it. Lower level paraplegics however rarely get spasms.

Spinal Cord Injury Information - Will You Stand For Those Who Can't?

Spinal Cord Injury Facts & Statistics

Who Do Spinal Cord Injuries Affect in the United States?

• 250,000 Americans are spinal cord injured.
• 52% of spinal cord injured individuals are considered paraplegic and 47% quadriplegic.
• Approximately 11,000 new injuries occur each year.
• 82% are male.
• 56% of injuries occur between the ages of 16 and 30.
• The average age of spinal cord injured person is 31.
• SCI injuries are most commonly caused by:
• Vehicular accidents 37%
• Violence 28%
• Falls 21%
• Sports-related 6%
• Other 8%
• The most rapidly increasing cause of injuries is due to violence; vehicular accident injuries are decreasing in number.
• 89% of all SCI individuals are discharged from hospitals to a private home, 4.3% are discharged to nursing homes.
• Only 52% of SCI individuals are covered by private health insurance at time of injury.

What Do Spinal Cord Injuries Really Cost?

• Length of initial hospitalization following injury in acute care units: 15 days
• Average stay in rehabilitation unit: 44 days
• Initial hospitalization costs following injury: $140,000
• Average first year expenses for a SCI injury (all groups): $198,000
• First year expenses for paraplegics: $152,000
• First year expenses for quadriplegics: $417,000
• Average lifetime costs for paraplegics, age of injury 25: $428,000
• Average lifetime costs for quadriplegics, age of injury 25: $1.35 million
• Percentage of SCI individuals who are covered by private health insurance at time of injury 52%
• Percentage of SCI individuals unemployed eight years after injury 63%. (Note: unemployment rate when this article was written was 4.7%)

Source: The University of Alabama National Spinal Cord Injury Statistical Center - March 2002 

 

Number of New Injuries Per Year

32 injuries per million population or 7800 injuries in the US each year

Most researchers feel that these numbers represent significant under- reporting. Injuries not recorded include cases where the patient instantaneously or soon after the injury, cases with little or no remaining neurological deficit, and people who have neurologic problems secondary to trauma, but are not classified as SCI. Researchers estimate that an additional 20 cases per million (4860 per year) die before reaching the hospital.

Total Number of People with SCI

• 82% male, 18% female
• Highest per capita rate of injury occurs between ages 16-30
• Average age at injury - 33.4
• Median age at injury - 26
• Mode (most frequent) age at injury 19
• Motor vehicle accidents are the leading cause of SCI (44%), followed by acts of violence (24%),falls (22%) and sports (8%), other (2%)
• 2/3 of sports injuries are from diving
• Falls overtake motor vehicles as leading cause after age 45
• Acts of violence and sports cause less injuries as age increases
• Acts of violence have overtaken falls as the second most common source of spinal cord injury
• Marital status at injury:
• Single 53%
• Married 31%
• Divorced 9%
• Other 7%
• 5 years post-injury:
• 88% of single people with SCI were still single vs. 65% of the non-SCI population
• 81% of married people with SCI were still married vs. 89% of the non-SCI population
• Employment status among persons between 16 and 59 years of age at injury:
• Employed 58.8%
• Unemployed 41.2%
  (includes: students, retired, and homemakers)
• Employed 8 years post-injury:
• Paraplegic 34.4%
• Quadriplegic 24.3%

People who return to work in the first year post-injury usually return to the same job for the same employer. People who return to work after the first year post-injury either worked for different employers or were students who found work.

How are spinal injuries caused?

Until the most recent figures were released by NSCIA in August, 1995, these were considered as the major causes of spinal cord injuries. See Answer to # 4 and Dr. Wise Youngís statistics in Section 2 for all the most recent demographics. One of the most surprising findings is that acts of violence have now overtaken falls as the second most common source of spinal cord injury,  as of the 1995 findings.

Previous To 1995:

• Motor vehicles 48%
• Falls 21%
• Sports 14% (66% of which are caused in diving accidents)
• Violence 15%
• Other 2%

The Injury

Since 1988, 45% of all injuries have been complete, 55% incomplete. Complete injuries result in total loss of sensation and function below the injury level. Incomplete injuries result in partial loss. "Complete" does not necessarily mean the cord has been severed. Each of the above categories can occur in paraplegia and quadriplegia.

Except for the incomplete-Preserved motor (functional), no more than 0.9% fully recover, although all can improve from the initial diagnosis.

Overall, slightly more than 1/2 of all injuries result in quadriplegia. However, the proportion of quadriplegics increase markedly after age 45, comprising 2/3 of all injuries after age 60 and 87% of all injuries after age 75.
92% of all sports injuries result in quadriplegia.

Most people with neurologically complete lesions above C-3 die before receiving medical treatment. Those who survive are usually dependent on mechanical respirators to breathe.

50% of all cases have other injuries associated with the spinal cord injury.

Most Frequent Neurological Category

Quadriplegia, incomplete 31.2%

Paraplegia, complete 28.2%
Paraplegia, incomplete 23.1%
Quadriplegia, complete 17.5%

Hospitalization

(Important: This section applies only to individuals who were admitted to one of the hospitals designated as "Model" SCI centers by the National Institute of Disability and Rehabilitation Research.)

Over 37% of all cases admitted to the Spinal Cord Injury System sponsored by the NIDRR arrive within 24 hours of injury. The mean time between injury and admission is 6 days.

Only 10-15% of all people with injuries are admitted to the NIDRR SCI system. The remainder go to CARF facilities or to general hospitals in their local community.

It is now known that the length of stay and hospital charges for acute care and initial rehabilitation are higher for cases where admission to the SCI system is delayed beyond 24 hours. Average length of stay (1992):

Quadriplegics 95 days
Paraplegics 67 days
All 79 days

Average charges (1990 dollars) Note: Specific cases are considerably higher.

Quadriplegics $118,900
Paraplegics $ 85,100
All $ 99,553

Source of payment acute care:

Private Insurance 53%
Medicaid 25%
Self-pay 1%
Vocational Rehab 14%
Worker's Comp 12%
Medicare 5%
Other 2%

Ongoing medical care: (Many people have more than one source of payment.)

Private Insurance 43%
Medicare 25%
Self-pay 2%
Medicaid 31%
Worker's Compensation 11%
Vocational Rehab 16%

After the Hospital

Residence at discharge

Private Residence 92%
Nursing Home 4%
Other Hospital 2%
Group Home 2%

There is no apparent relationship between severity of injury and nursing home admission, indicating that admission is caused by other factors (i.e. family can't take care of person, medical complications, etc.) Nursing home admission is more common among elderly persons.

Each year 1/3 to 1/2 of all people with SCI are re-admitted to the hospital. There is no difference in the rate of re-admissions between persons with paraplegia and quadriplegia, but there is a difference between the rate for those with complete and incomplete injuries.

Survival

Overall, 85% of SCI patients who survive the first 24 hours are still alive 10 years later, compared with 98% of the non-SCI population given similar age and sex.

Causes of Death

The most common cause of death is respiratory ailment, whereas, in the past it was renal failure. An increasing number of people with SCI are dying of unrelated causes such as cancer or cardiovascular disease, similar to that of the general population. Mortality rates are significantly higher during the first year after injury than during subsequent years.

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Every 48 minutes someone in the U.S. is paralyzed from a spinal cord injury.  Millions worldwide are living with paralysis as a result and living with the knowledge that there is currently no cure for their injury.

In an effort to raise awareness about the critical need for better treatments and preventive measures, September has been designated National Spinal Cord Injury Awareness Month by the U.S. Senate, the result of a resolution co-sponsored by Sens. Marco Rubio (R-FL) and Bill Nelson (D-FL).  To bolster the resolution’s message, we are launching an awareness campaign lasting the entire month of September.

The goal of the campaign is to ask “Will You Stand Up For Those Who Can’t?”  The intent is to create a national conversation about the devastation of paralysis, and to bring this condition to the forefront of public awareness.

“Paralysis does not discriminate.  People need to realize that paralysis can happen to anyone at any time,” said Nick Buoniconti.  “But the reality of today’s statistics can’t be disputed.  Every 48 minutes another person in the U.S. will become paralyzed. That is simply unacceptable. Each of us must do what we can to make a difference.  I am personally asking you, will you stand up for those who can’t and do one or more of the following?”

We are asking our friends and supporters to:

Make a donation in honor of a loved one, caregiver, scientist or organization who is working to improve the life of those injured.  If you would like to host a small fundraising party at your house, please email bfinfo@med.miami.edu and we will send you more information.

“The inspiring work of The Miami Project to Cure Paralysis has touched the lives of millions of young athletes, accident victims and troops in harm’s way and I commend them for it,” said Sen. Rubio. “By designating September as National Spinal Cord Injury Awareness Month, I hope we can further educate the public about how crippling accidents can be prevented while promoting the important work being done to help victims walk again.”