Alan Hieber, DMD Contributor

https://www.linkedin.com/in/alanhieber/

Alan is 27 and earned his bachelor’s degree in mass communication from Wright State University (Dayton, OH) in 2016. His writing background is primarily in sports, and he has done PR work for Wright State’s athletic teams and several articles for the Dayton Daily News. At birth he was diagnosed with the rare genetic and degenerative muscle disease Duchene Muscular Dystrophy, and he receives care for his condition at a renowned clinic within Cincinnati Children’s.

All articles by Alan Hieber, DMD Contributor

DMD Columns, Patient Perspectives

Why Some Tests for DMD Treatment Make Me Feel Like Just a Number

Alan Hieber, DMD Contributor

October 8, 2021

As a patient with Duchene muscular dystrophy (DMD), I understand how vital testing is in the care process since this disease impacts several muscle systems.

Researchers worked to better understand and manage patients with mild or moderate hemophilia, who can be an underrepresented and underserved population.

DMD Columns, Patient Perspectives

How a Lack of Understanding of DMD Nearly Cost Me My Life

Alan Hieber, DMD Contributor

September 27, 2021

Living with Duchenne muscular dystrophy (DMD), I have experienced emergencies on several occasions.

DMD Columns, Patient Perspectives

Here’s Why the Trajectory of Care Standards for DMD Is Rising

Alan Hieber, DMD Contributor

August 27, 2021

In 2004, I started receiving care at Cincinnati Children’s Hospital Medical Center (CCHMC) through its neuromuscular clinic. Luckily for me, this was a time when great advances were being made treating patients with Duchenne muscular dystrophy (DMD).

DMD Columns, Patient Perspectives

Facing an Uncertain Future With DMD and How I Discussed It With My Doctors

Alan Hieber, DMD Contributor

August 20, 2021

As someone living with Duchene muscular dystrophy (DMD) my mortality is kind of like an “elephant in the room” paying rent in my mind. Just a few decades ago, having DMD often meant survival to the age of 20 was not likely. With advances in medicine, quality of life and life expectancy have made significant…

DMD Columns, Patient Perspectives

DMD Lessons Learned from a Sleep Study

Alan Hieber, DMD Contributor

July 28, 2021

Every night, I wear a Bilevel Positive Airway Pressure (aPAP) mask during sleep. For Duchenne muscular dystrophy (DMD) patients, this device is vital for counteracting a serious depletion in breathing function and improving quality of life. As you sleep, your breathing muscles naturally relax themselves, which doesn’t mix well for someone like me. This can…

DMD Columns, Patient Perspectives

Entering The Twilight Zone: From Pediatrics to Adult Care in DMD

Alan Hieber, DMD Contributor

July 22, 2021

When you have a rare disease, your medical care is likely specialized. In my case with Duchenne muscular dystrophy (DMD), this has created a unique circumstance in that I’ve been going to the same clinic for pediatric care and now adult care since few providers have such a deep understanding of my condition. This has…

DMD Columns, Patient Perspectives

My Spinal Fusion Memoir and What It Taught Me About Patient Care

Alan Hieber, DMD Contributor

July 5, 2021

There is a thin line of a scar that creeps down the center of my back. It is a visual reminder of the spinal fusion procedure I had 16 years ago. Patients with Duchenne muscular dystrophy (DMD) can develop scoliosis – a curvature of the spine – thought to be the result of the progressive…

DMD Columns, Patient Perspectives

Don’t Discard “Mental Scars” While Living With Duchenne Muscular Dystrophy

Alan Hieber, DMD Contributor

July 1, 2021

When you have a disease of the muscles, such as Duchenne muscular dystrophy (DMD), its physical nature is clearly visible. What is less visible, but nonetheless important, are the mental scars that arise from living with this disease. In my experience, while I have many of those mental scars, I’ve also been fortunate to have…

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