patient stories

Family with Sickle Cell Gives Back to Others with Disease

patient with sickle cell disease care packageMother and daughter Lillie Thomas-Daugherty and Jessica Smith both struggle with sickle cell disease, but have made it their life’s work to give back to others with the same illness. In September, in recognition of National Sickle Cell Awareness Month, Thomas-Daugherty delivered 30 care packages to sickle cell patients at Emory Decatur Hospital and Emory Hillandale Hospital.

Thomas-Daugherty’s motivation for creating the care packages was based on her family’s life-long journey with sickle cell disease. She hopes to raise awareness of the disease and its unique challenges so that sickle cell patients receive the medical attention and care they need.

“My daughter was hospitalized 17 times before her third birthday,” says Thomas-Daugherty. “She was in and out of the hospital regularly for blood transfusions or to receive medications to ease her pain. I nearly lost her, but she’s a fighter and I consider her my warrior.”

Sickle cell disease (SCD) affects millions of people worldwide. Although it is not a well-known disease, people who live with SCD may have a lifetime of pain and other health problems.

“Our hospitals are committed to heightened awareness of sickle cell disease and the ongoing education of our patients, families, staff and providers. This allows for appropriate medical evaluation, timely intervention, and prevention of painful complications. More importantly, our commitment lends itself to the respectful and compassionate care that our sickle cell patients desperately need and deserve,” says Shunda Harper, executive director, Emergency Services at Emory Hillandale Hospital.

People who have sickle cell disease are born with it. This chronic disease affects approximately 90,000 to 100,000 Americans. The abnormal red blood cells are shaped like crescent moons which blocks normal blood and oxygen flow in the body. This may lead to repeated organ damage, harmful infections, stroke, and intense pain episodes.

When a pain episode happens, it can be felt deep down in the bones or joints. “One minute you’re fine and the next minute you’re being rushed to the hospital,” Thomas-Daugherty explains. To minimize the episodes, “I’ve taught Jessica how to advocate and take care of herself, eat well and drink water.”

“The best way to live a full life and enjoy most activities is to stay as healthy as possible,” says Dr. Bob Dent, vice president, Patient Care Services, and chief nursing officer.
“Even after doing all you can to care for yourself, it is very important to plan to get help immediately when there is a problem,” continued Dent.

Thomas-Daugherty’s daughter Jessica Smith is now 31 years old and has two daughters of her own, ages 11 and 8. One of her daughters has sickle cell disease and the other carries the sickle cell trait. Smith is pursuing a degree from Georgia State University and works full-time, but continues to have health challenges. Sometimes, she gets tired walking even short distances. She continues to get blood transfusions because sickle cells die quicker (within 10 to 20 days) than normal blood cells (up to 120 days), leaving her extremely fatigued.

Thomas-Daugherty encourages people in the community to donate blood so sickle cell patients may receive blood transfusions when needed. She also wants caregivers to understand the disease and treat sickle cell patients with compassion.

“We are individuals with different sickle cell needs and challenges,” expresses Thomas-Daugherty. “I’m advocating for adult sickle cell patients who don’t have someone to speak for them.”

In her book, In The Midst Of A Sickle Storm, Thomas-Daugherty shares her experiences and provides insights and information on how to cope with sickle cell disease. Proceeds from the book allow her to provide care packages for sickle cell patients. In September, Thomas-Daugherty’s 30 care packages were given to adult sickle cell patients at Emory Decatur and Emory Hillandale Hospitals. The care packages include adult coloring books, hygiene items and words of encouragement.

“I want them to know they’re not alone,” says Thomas-Daugherty.

Patient Family Advisor Spotlight – Marv Trott

Image of Marv Trott

Patient Family Advisors (PFAs) are current or former patients and family members. They volunteer their time to partner with Emory Healthcare leadership, staff, and doctors. They serve on committees, councils, project teams and other groups working in a variety of ways to improve patient care.

In May 2017 one of our dear PFA’s made his transition. Marv Trott passed away in Emory University Hospital Hospice. Marv had been a PFA since 2009. He and his wife Margie were early pioneers of the Patient Family Advisory Council. This is Marv’s story…

“In 2007 Dr. Nathan Spell asked if my wife Margie and I would be interested in an Emory project called “Patient and Family Centered Care”. We agreed and Hal Jones came to our home and encouraged us to join which we (wife Margie) both did. During the next two years we both were involved in focus groups in the development of the “Care” project and as PFA’s in several projects including “Disclosure”, the “Emory University Hospital at Northlake” now known at EUOSH, and the “CarePage Website”.

In early 2009 I participated in the development of the PFAC and Margie continued as a PFA in the “Bedside Shift Report Program”. Since that time I have continued as a member of the PFAC and also have been involved as a PFA in many projects including the “Call Center”, “Portal”, ”Secret Shopper” and the latest “J Wing Expansion”. Some of these occurred before Volgistics was instituted in 2010.

Both Margie and I have been surgical patients at Emory.

In World War II, I was in the “Battle of the Bulge”. With the help from the GI bill, I graduated from the University of Rochester in 1950 with a Bachelors Degree in Electrical Engineering. In 1948 I started and operated an Electronic Design and Manufacturing company during the next 40 years. After I sold the business in 1988 I became a Mentor in SCORE which is a resource of the (SBA) US Small Business Administration. During the past 27 years, I have been actively mentoring Clients who are starting or are currently in business.”

Marv will be missed. We are forever indebted to his many contributions to the PFAC and the Office of Care Transformation.

About Patient Family Advisors

How was your experience at Emory? If you or a loved one received care at Emory, please consider becoming a Patient and Family Advisor (PFA). As a PFA, you’ll be directly involved in helping the organization make better decisions by sharing your experiences, perspectives, and expectations. as a patient or family member.

Learn more about the PFA program.

Revolutionary Research Underway with First-in-Man Clinical Trial for Hunter Syndrome

Hunter SyndromeAs an academic medical center, many physicians at Emory not only take care of patients on a daily basis, but also partake in research and teaching/training the future generations of physicians.

It’s through discovery that happens during clinical trials and research that allows for new advancements in medicine to be made. Providing the standard of care of is not always enough. New treatment therapies, technology and care delivery techniques must be developed, tested and perfected in order to keep advancing health care.

Not sure what clinical trials are? Check out our blog post that explains Clinical Trails>>

 
Currently happening at Emory is the first-in-man clinical trial, testing a newly developed drug for a rare genetic condition called mucopolysaccharidosis type II (MPS II) or Hunter syndrome.

Hunter syndrome is a hereditary disease in which a critical enzyme is either missing, or there is not enough of it. Without enough of this enzyme, long chains of sugar molecules do not break down properly in the body and accumulate in the organs and tissues and become toxic.

To treat most cases of Hunter syndrome, an enzyme replacement medication is used, but this regimen does not cross into the brain to treat the most severe cases of Hunter syndrome. In this particular trial, Emory researchers are testing whether a man-made enzyme fused with an antibody and injected into the bloodstream will deliver the enzyme therapy into the brain. This is the first time this medication combination has been tested in a human.

The video below features Emory patient, Chris Dutcher. “By testing this new medication for the first time in a human, my hope is to help children with severe Hunter syndrome,” says Dutcher, whose younger brother also has the same disorder.

Chris has the mild version of Hunter syndrome, but his symptoms are still quite serious and involve the lining of the brain and spinal cord, which are not treated by existing medications. He is the first patient to receive the new treatment therapy.

More information about Hunter syndrome and this clinical trial can be found in the Emory News Center. Learn more about clinical trials at Emory Healthcare.

Related Resources

A Victim No Longer

Dick TaylorToday, I write poems in ode form as a hobby. How does this peculiar habit of mine relate to the stroke I suffered September 16, 2013?

I was admitted to Emory University Midtown Hospital on September 16th to undergo a much needed hip replacement surgery. All went well, and I was scheduled for release the following day. But around midnight I was caught unaware by a stroke that affected my entire left side. I spent five more days in the hospital before I was discharged to Emory Rehabilitation Hospital to begin my recovery. I believe strongly that God sent me there.

Can you imagine hip surgery and a disabling stroke occurring on the same day? It goes without saying that coping with both became a daunting challenge for me. And, I was mad at the entire situation.

When I placed pen to paper, I intended the poem to be an upbeat, positive feel good piece with a motivational flavor. The finished product shocked me, because it reflected me in an angry light, more confused and afraid than strong and hopeful; not the outcome I was seeking.

However, upon review, I concluded that my “Ode To A Stroke” was, in the end, truthful and realistic; something fellow stroke survivors could and would embrace. I had finished the poem promoting hope, determination and perseverance; traits representing the challenges faced every day by people with stroke.

Throughout my ordeal the commitment of the nurses, doctors, and staff has been inspirational and healing. The nurturing and training administered by my physical, occupational, recreational and speech therapists over the ensuing months has given me renewed strength. Together, they saved my life…a victim no longer; and they continue their work daily to improve the lives of those afflicted by stroke.

ODE TO A STROKE or A Life Altered
 Dick Taylor, December 26, 2013
I was moving forward at a pace,
In this life called the human race,
With strength and purpose and resolve,
And little thought to how we evolve.

How simple it has been to ambulate,
My legs stride out with a steady gait,
Effortlessly in motion with no command,
To walk, to run, to sit or stand.

My arms reach and carry,
And hug and tote,
And accomplish tasks,
As if by rote.

And, oh! My hands!
They grasp and cling and digitize,
Fingers point, Aha!
As I discover and realize.

How astonishing our bodies,
Intricate machines to behold,
Easily functioning,
Without being told!

Until….that nightmarish instant,
Unforeseen, unexpected, unwarranted, unfair,
When an explosion of cranial havoc,
Renders me motionless and unaware.

I look at my lifeless arm,
I tell my hand to grip, to clasp,
And wonder why it won’t respond,
Nothing works, “my God!” I gasp!

Minutes ago I was hearty and hale,
Now I lie here, wane and pale,
Feeling alone in my solitude,
Facing uncertainty and rectitude.

But….life goes on, I will survive,
I am told to work, I am alive,
Does anyone know how angry I feel,
depressed, in pain, a long time to heal?

My life has been altered,
Run down from behind,
I could not see it coming,
So disabling and unkind.

So…..where do I go from here?
How do I rebuild my whole?
When imbalance and weakness,
And heartache assault my very soul?

God answers these fears directly,
He dispatches people who care,
Angels to push and train and
Encourage me in my physical repair.

Time and patience and persistence,
Offer recovery I am sure,
And Faith that I will mend,
Determined to find my cure!

When Life Brings New Challenges: A Rehabilitation Patient’s Story

Emory Rehabilitation HospitalPrior to April 2011, I was working as a records and document specialist for Fulton County, in addition to taking courses to become a special education teacher. I was also facing the challenge of being a single parent of two beautiful boys, a 9 year old and 6 year old.

It was in April 2011 that I was diagnosed with nonspecific encephalitis. After several weeks at another facility, I was transferred to Emory’s rehabilitation hospital. I underwent intensive rehab as an inpatient, and when I was strong enough, returned to Emory’s outpatient rehab program.

The Outpatient rehab program provides a continuity of treatment and long-term follow-up with physical, occupational and speech therapists, along with Emory’s physicians and other rehabilitation specialists. After a lot of hard work and several months of therapy, I was released in December 2011 with positive projections. However, by the end of February 2012, I had a setback and found myself in the hospital again.

A month later, the decision was made by my mother and the doctors to take me off all medications so that I could have an unobstructed brain biopsy. During this time my condition worsened and I was eventually placed on a feeding tube and became non-responsive.

Finally, I was able to have the biopsy and remained at the hospital a month because of various complications. Upon release I went into a nursing home, and after several weeks, I was able to go home and started home-based therapy. Once I was strong enough, I returned to Emory’s outpatient rehab program where the real progress began.

I improved there because of the dedication of the therapists who pushed me even when I resisted. By the time I left Emory in December I was able to bear weight on my legs and use a walker.

Since leaving Emory, I am now able to walk again independently. I do continue outpatient therapy for additional speech and physical therapy. I have had my challenges and struggles in taking care of myself and my 2 boys, but I never gave up. My boys have had to handle a lot over the past 2 years. My mom and family have been there through it all and I am very grateful.

I am also very grateful to all the Emory rehabilitation therapists, physicians and staff for not giving up on me and for their ever present encouragement.

Remember, Never Give Up!

Michaela Glover