patient stories

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.

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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