DMD Columns Archives

My Friends Make Duchenne Muscular Dystrophy Manageable

By

May 6, 2022

I see my friends as an integral part of fueling the drive I have to face the tribulations of Duchenne muscular dystrophy (DMD).

DMD Columns, Patient Perspectives

Wheelchair Accessibility Issues Persist for This Muscular Dystrophy Patient

By

Jakira Avery, MD Contributor

April 29, 2022

I can’t believe that, as a limb-girdle muscular dystrophy patient, I still have to worry about accessibility in 2022.

DMD Columns, Patient Perspectives

My Song List for Coping With Duchene Muscular Dystrophy

By

Alan Hieber, DMD Contributor

April 15, 2022

In this column, contributor AlanHieber shares his playlist that he feels encapsulates what iit is like to have Duchenne muscular dystrophy (DMD).

DMD Columns, Patient Perspectives

Don’t Penalize the Disabled for Working to Supplement Disability Insurance

By

Jakira Avery, MD Contributor

April 7, 2022

Living with limb-girdle muscular dystrophy (LGMD) with only one source of income a month is stressful.

DMD Columns, Patient Perspectives

My Father’s Strength and Resilience Have Been Key in My Battle With DMD

By

Alan Hieber, DMD Contributor

April 1, 2022

My father pays close attention to the around-the-clock care that my disease, Duchenne muscular dystrophy (DMD), requires.

DMD Columns, Patient Perspectives

Lessons Learned From My Daily Battle With Fatigue From DMD

By

Alan Hieber, DMD Contributor

March 18, 2022

The number one way I combat my often depleted energy is by giving my body the rest it needs to function effectively.

DMD Columns, Patient Perspectives

Fighting Neuromuscular Disease Is a Team Sport

By

Alan Hieber, DMD Contributor

March 15, 2022

As a Duchenne muscular dystrophy (DMD) patient, from about age 11 through 26, marathons were an annual tradition for me.

CF Columns, DMD Columns, Patient Perspectives, Pompe Columns, SMA Columns

See Me, the Person, Not Me in My Wheelchair

By

Jakira Avery, MD Contributor

March 4, 2022

A lot of people see the wheelchair and automatically assume we can not do anything or they feel sorry for people like us. I do not want anyone to feel sorry for me, because I do not feel sorry for myself.

DMD Columns, Patient Perspectives

Rare Disease Day Underscores the Vital Role of Advocacy and Raising Awareness

By

Alan Hieber, DMD Contributor

February 24, 2022

The unique hindrances that patients and caregivers in the rare disease community encounter are given attention on Rare Disease Day.

DMD Columns, Patient Perspectives

LGMD: Confusion, Anxiety Come With an Early Diagnosis

By

Jakira Avery, MD Contributor

February 16, 2022

Being diagnosed with limb-girdle muscular dystrophy (LGMD) at a very young age was confusing.

DMD Columns

Wheelchair Accessibility Issues Persist for This Muscular Dystrophy Patient

My Song List for Coping With Duchene Muscular Dystrophy

Don’t Penalize the Disabled for Working to Supplement Disability Insurance

My Father’s Strength and Resilience Have Been Key in My Battle With DMD

Lessons Learned From My Daily Battle With Fatigue From DMD

Fighting Neuromuscular Disease Is a Team Sport

See Me, the Person, Not Me in My Wheelchair

Rare Disease Day Underscores the Vital Role of Advocacy and Raising Awareness

LGMD: Confusion, Anxiety Come With an Early Diagnosis

Want to read more?

Valentine’s Day a Time to Reflect for DMD Patients