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Ehlers-Danlos Syndrome patient Ellen Smith serves as advocate for pain relief access

BY DSN STAFF

Ellen Smith has Ehlers-Danlos Syndrome, a progressive degenerative connective tissue disorder characterized by joint hypermobility, skin extensibility and tissue fragility. Ellen knew from childhood that she was unusually flexible and highly mobile, but thought nothing of it. She first encountered problems as a master swimmer, when she began to have excessive shoulder pain from overstretching her ligaments. To ease the pain, she would stop swimming for a week. She was once given a steroid shot, but this gave her horrific pain and made her unable to raise her arm for a month. Ellen now knows this course of treatment was the worst thing for EDS, as steroids break down collagen even further.

In 2002, Ellen had surgery for a dropped bladder. When her bladder dropped again two years later, her surgeon referred her to a geneticist for testing, and Ellen was diagnosed with EDS. Although she intuitively knew the diagnosis was right, she was shocked and sought a second and third opinion before she finally accepted it.

Classical EDS affects 1-in-20,000 to 1-in-40,000 people. Ellen’s case is severe and has worsened in the past year. She is extremely cautious in public, as the slightest touch, bump, squeeze or hug can easily dislodge her joints. Since her diagnosis, as the deterioration of connective tissue in her joints has progressed, she has undergone 22 major surgeries to help her maintain mobility. Her pain increases significantly throughout the day, and on bad days, her mind becomes foggy. With compromised oxygen levels reaching as low as 45%, Ellen relies on a BiPAP SIT (i.e., a home respirator) to keep her oxygen levels within a normal range.

Maggie, Ellen’s black Labrador service dog, is her protector. Maggie helps stabilize Ellen so she can stand and walk, and brings her medicine from the refrigerator. Just six days after receiving Maggie, Ellen stopped breathing in the middle of the night, and Maggie woke her, saving her life.

Ellen has had to stop teaching, swimming and coaching. She can no longer help her husband with small home improvement projects, a pastime she once enjoyed. To the outside world it appears that EDS robbed Ellen of her life, and yet Ellen would disagree. Although she recognizes that her life has shifted course, she refuses to become emotionally paralyzed. She and her husband, Stu, live by the motto that you must enjoy what you have while you have it. She has passion for life and continues to live with hope and love.

Ellen is proactive in her therapy program. She follows an exercise regime on her bed to strengthen core muscles and uses pool therapy to jog. Because she also has a rare form of celiac sprue, a chronic digestive react disease that interferes with the digestion and absorption of nutrients from food, she follows a strict diet that prohibits dairy, soy and gluten.

Although Ellen has had severe reactions to most medications, she has found pain relief from medical marijuana, which is legal in her home state of Rhode Island. She is proud of her state for passing legislation enabling its distribution, and is an active supporter of the Gifting Program, which allows people to share limited amounts with others.

Ellen works as an advocate leader for the U.S. Pain Foundation and as a state ambassador for the Arthritis Foundation. Another organization that is particularly close to her heart is the Ehlers-Danlos Syndrome Network CARES Foundation, a group dedicated to creating public awareness and funding research.

While working with these organizations gives Ellen a sense of purpose, she finds the greatest fulfillment in connecting with other EDS patients. She understands the speculation and criticism they experience, and urges them to have hope and courage. Ellen is still a compassionate educator. She teaches people to be proactive, to be their own best advocate and to find their own answers, believing that if something cannot hurt us, it is worth trying.

With the support of her four sons, the devotion of Maggie and the unconditional love of her husband, Ellen moves forward. She lives each moment as it comes and is happy to be alive.

"I don’t want to be remembered as someone who pitied herself. I want to be remembered as person who tried, a person who made a difference, lived life and found joy."



Resources

INvisible Project
Ehlers-Danlos National Foundation
Ehlers-Danlos Syndrome Network C.A.R.E.S., Inc.

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Walgreens recognized for Hurricane Sandy efforts by Department of Homeland Security

BY Michael Johnsen

WASHINGTON — The Department of Homeland Security on Wednesday announced that Walgreens, Monsignor John Brown and the New York Mets have each been awarded the 2013 Rick Rescorla National Award for Resilience, recognizing their contributions to their communities in the aftermath of Hurricane Sandy.

“The Rick Rescorla National Award for Resilience recognizes outstanding response to a catastrophic incident and leadership in fostering resilient and prepared communities," said acting Secretary of Homeland Security Rand Beers. “The devastation and destruction caused by Hurricane Sandy impacted millions of families, and today many are still recovering from the storm. But this storm also produced many heroes who rose to the challenge and assisted those in need. The three recipients of this year’s award truly exemplify this spirit of resilience and strength, serving as models for communities across our nation.”

Walgreens implemented business continuity plans before the storm made landfall, enabling the company to continue providing for basic human needs. In the aftermath of the storm, Walgreens quickly dispatched mobile pharmacies and constructed temporary pharmacies, continuing to provide services throughout the region. The company also shipped 25,000 blankets, three semi-trailer loads of water and other items that governmental organizations were lacking.

Under Monsignor Brown’s leadership, St. Francis de Sales Parish became the largest relief center on the Rockaway peninsula, providing hot food, medical care, mental health care, trauma counseling, clothing, cleaning supplies, pet food and veterinary care. At the height of the effort it served between 4,000 and 10,000 people per day.

The New York Mets, working with the city’s Office of Emergency Management, opened their facilities to be used as a logistics dtaging srea for more than three and a half months to receive, stage and distribute unassigned resources prior to or following the storm. The Mets also supported first responders’ daily efforts by providing housing for up to 600 workers a night and distributing more than 1,500 meals per day during the peak recovery period following the storm.

In 2011, DHS created the Rick Rescorla National Award for Resilience in memory of Richard "Rick" Rescorla, who on Sept. 11, 2001 led a massive evacuation of Morgan Stanley’s 2,700-person workforce located in the South Tower, saving the lives of all but six. Following the 1993 terrorist attacks on the World Trade Center, Rescorla regularly drilled his Morgan Stanley employees in disaster preparedness and response, especially evacuation, ensuring that employees knew how to evacuate and where to go on 9/11.

The Rescorla Award is the Department of Homeland Security’s first national resilience award for superior leadership and innovation by a non-governmental individual or organization who exemplifies the qualities and achievements of Rick Rescorla, emphasizing leadership in effective preparation, response and recovery in the face of disasters.

 

 

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15th annual NACDS Foundation Dinner raises more than $1.8M

BY Antoinette Alexander

NEW YORK — The National Association of Chain Drug Stores Foundation celebrated its 15th Annual Foundation Dinner the evening of Dec. 3 in New York City, raising more than $1.8 million to support the Foundation’s research, education and medication adherence initiatives.

Walgreens and Duane Reade were the premier sponsors of the event.

General David H. Petraeus (U.S. army, retired), former director of the CIA and former commander of coalition forces in Iraq and Afghanistan, delivered the keynote address, sharing with attendees his experiences in leading major military and intelligence operations over nearly four decades. The NACDS Foundation Dinner also included recognition of outstanding contributions in advancing public health by Rear Admiral Scott F. Giberson, acting U.S. deputy surgeon general.

 

 

 

 

 

 

 

From left to right: Alison Farrell of Ahold, Jim Sheninger of CVS; Paige Berger of ScriptSave and Dave Halter of MedImpact.

 

In accepting the 2014 NACDS Foundation Excellence in Patient Care Award, Giberson, who is a pharmacist, was recognized for his service in a number of leadership capacities within the Division of Commissioned Corps Personnel and Readiness, including director, chief professional officer (pharmacy), chief pharmacist and senior public health advisor.

“It’s evident by Giberson’s commitment to service — both to the nation and patients — that he is fully deserving of this year’s NACDS Foundation Excellence in Patient Care Award,” said NACDS Foundation president Kathleen Jaeger. “We are honored to recognize his distinguished career in patient care and thank him for his continued service to the nation.”

Concluding an evening of recognition and good will, Jaeger added, “We are deeply grateful for the support and commitment of the NACDS Foundation benefactors. The Foundation’s engagement in research and education would be limited without your support and your active participation. We look forward to continued collaboration as the NACDS Foundation strengthens its mission to benefit patients, improve outcomes and advance public health.”

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