May
16

dEBra of America


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by MainAdmin
posted in Charities in SL
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Epidermolysis Bullosa (EB) — The Worst Disease You’ve Never Heard Of.™

debra of America SL Office, Party City – http://maps.secondlife.com/secondlife/Banshee/168/34/57

I was investigating the Destinations list and came across this SIM and it got me thinking….. This is perfect way for charities to reach so many people and the Cancer fundraiser that the AEG held last year is a classic example of the good we can all help to make if we all pull together.

So with that in mind, I thought it was very much deserving of a post on here to help raise the awareness of it and get people involved in helping to raise money for what is really an unheard of disease that does affect so very many people.

Do jump over to their SIM and pick up a t-shirt and wristband or head over to their website and donate to the cause.

What is debra and EB?

DebRA is dedicated to finding a cure for Epidermolysis Bullosa (EB) – The Worst Disease You’ve Never Heard Of.™ EB is a rare genetic skin disease causing chronic, painful blistering affecting 1 in every 20,000 live births in the US.

The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), was founded over 30 years ago and is the only national nonprofit organization dedicated to funding research and providing supportive services and programs for those with Epidermolysis Bullosa (EB) — The Worst Disease You’ve Never Heard Of.™ Visit: www.debra.org

Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB). EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available.

The manifestations of EB, the symptoms the person suffers from, and the overall long term outcome on quality of life run the gamut from mild to devastatingly severe. This is dependent on several factors including the type and subtype of EB and the inheritance pattern (autosomal dominant versus recessive). There are many people who are diagnosed with milder forms of EB, which, while they can be extremely difficult and painful to live with, are not disfiguring or lethal. In these forms of EB blistering of the skin may be limited to the hands and feet which may not result in any scarring or loss of function. In more severe forms there is generalized blistering of the skin as well as injury to many internal organs and bodily systems. These more severe forms of EB result in disfigurement, disability and early death, usually before the age of 30. In fact, some forms of EB are lethal in the first few months of life.

EB is caused by mutations in the DNA code that make up genes. Genes are responsible for making and expressing proteins. EB can result from one genetic mutation in any one of the 18 genes that have been found to cause the disorder. These mutations, or errors in the genetic code, may not allow the affected gene to produce a specific protein, or it may result in the incorrect formation of that protein. Either way, the mutation does not enable the affected protein to work correctly thus resulting in extremely fragile skin, and other manifestations of EB like: anemia, cardiomyopathy, syndactyly (fusion of the fingers and toes), renal insufficiency, dysphagia (difficulty swallowing), malnourishment, cancer, constipation, osteoporosis, muscular dystrophy and pyloric atresia.

There are four types of genetically inherited EB: Simplex, Dystrophic, Junctional and Kindler. These four major types of EB differ phenotypically (what physical manifestations look like) and genotypically (the genetic makeup) as well as by the area of the skin where there is blistering, otherwise known as “the site of ultra-structural disruption or cleavage”. There is also an autoimmune form of the disorder called, EB Acquisita .

Children with EB are known as Butterfly children because their skin is as fragile as the wings of a butterfly.

There are about 30,000 people with EB in the United States.

EB affects both genders and every racial and ethnic background.

PROGRAMS & SERVICES:

www.debra.org/programs

• NEW FAMILY PROGRAM: Provides a comforting support system for newborns and families as they begin to care for a child with EB. Families receive practical information on wound care and issues related to the care of infants with EB, medical supplies, and gifts to comfort and welcome the new baby. A trained coordinator offers one-on-one support to families by phone and/or through in-person educational visits.

• WOUND CARE CLEARING HOUSE: The WCC distributes wound care supplies to those who cannot afford them. The specialized, non-adherent bandages and other necessary supplies can have a retail cost in excess of $10,000 per month. In many cases, private insurance, Medicaid or Medicare does not cover the entire amount. The Clearinghouse aims to bridge these gaps in coverage, as well as support those without insurance. Last year, over $320,000 worth of supplies were sent directly to those in need.

• FAMILY CRISIS FUND: provides emergency assistance to alleviate the difficulties of unreimbursed costs of medical supplies, comforting aids or procedures for EB patients.

• EB NURSE EDUCATOR: Geri Kelly manages over 3000 inquiries annually. She answers medical questions, makes referrals, and directs EB patients to important resources. Call Geri at (866) 332-7276 or email nursegeri@debra.org

• THE PATIENT CARE CONFERENCE: held every 2-years to connect EB families with the best and brightest minds working on care and cure strategies for EB. Watch videos from the 2012 PCC in Orlando, FL (July 30-August 1) www.debra.org/pcc2012videos

• DebRA of America has helped fund 30 grants in 9 countries.

• 89.4 cents of every dollar donated to DebRA of America funds our programs, services and research for a cure.

Company Overview
debra of America, Inc.
75 Broad Street, Suite 300
New York, NY 10004

Phone: (212) 868-1573

DONATE: www.debra.org/donate

LOCAL EVENTS: www.debra.org/events

Fundraise and spread EB Awareness by creating a PERSONAL FUNDRAISING PAGE: www.debra.org/personal-fundraising

Website: http://www.debra.org
Website: http://www.debra.org/donate (donate)
Twitter: https://twitter.com/debraofamerica
Photos: http://bit.ly/DebRAofAmericaPhotos
Pinterest: http://pinterest.com/debraofamerica
YouTube: http://www.youtube.com/DebraofUS
LinkedIn: http://www.linkedin.com/company/debra-of-america
Facebook: https://www.facebook.com/DebraofAmerica

debra of America SL Office, Party City – http://maps.secondlife.com/secondlife/Banshee/168/34/57



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