Pompe Columns Archives

Daily Nutrition and Support on the Long Road From Diagnosis to Living With Pompe

By

Bruce Campbell, Pompe Disease Contributor

January 14, 2022

Pompe disease columnist Bruce Campbell discusses issues related to the long road from symptoms to diagnosis and the importance of nutritional practices.

NMOSD Columns, Patient Perspectives, Pompe Columns

My Daughter’s Fatal Struggle With Pompe, Then My Diagnosis With NMOSD

By

Teaira Daniels, NMOSD Contributor

January 11, 2022

Part 1 of 2: Neuromyelitis optica spectrum disorder (NMOSD) columnist Teaira Daniels sets the stage for how rare diseases turned her world upside down.

Patient Perspectives, Pompe Columns

How Stress Can Become the Tipping Point for Pompe Patients

By

Bruce Campbell, Pompe Disease Contributor

January 4, 2022

Once I figured out stress was causing huge reactions in my body, I started looking at ways to manage and gain control over the responses of my body.

Patient Perspectives, Pompe Columns

Rare Disease Patients Find Many Medical Facilities Are Not ADA-Friendly

By

Keyana Sullivan, Pompe Disease Contributor

December 22, 2021

I would like more medical services to experience having customers, clients, and patients with rare diseases.

CC Columns, HEM Columns, LAL-D Columns, LCFAOD Columns, Patient Perspectives, Pompe Columns

How COVID Variants Affect Pompe and Other Rare Disease Patients

By

Keyana Sullivan, Pompe Disease Contributor

December 15, 2021

COVID-19 began to worry me, but it wasn’t until it hit my city that it began to terrify me, especially as a Pompe disease patient.

Patient Perspectives, Pompe Columns

Pompe Disease Made Me a Jack of All Trades

By

Bruce Campbell, Pompe Disease Contributor

December 3, 2021

For many, getting a rare disease diagnosis signals that most of the battle is already won. Sound strange?

LAL-D Columns, LCFAOD Columns, Patient Perspectives, Pompe Columns

Rare Diseases and Poor Mental Health Are Not Cause and Effect

By

Keyana Sullivan, Pompe Disease Contributor

November 29, 2021

Don’t assume I’m not mentally healthy because of my Pompe disease.

Patient Perspectives, Pompe Columns

Pompe Patients Must Share Experiences to Help Guide Treatment

By

Bruce Campbell, Pompe Disease Contributor

November 26, 2021

I am a firm believer in sharing some of my personal experiences since being diagnosed with Pompe disease.

Patient Perspectives, Pompe Columns

Reflecting on the Long Road From Pompe Disease Diagnosis to Treatment

By

Bruce Campbell, Pompe Disease Contributor

November 18, 2021

Pompe disease columnist Bruce Campbell answers questions on the challenges before his diagnosis and how he took ownership of his health after it.

Patient Perspectives, Pompe Columns

Pompe Patients Face Red Tape, Long Delays Covering Vital Medical Expenses

By

Keyana Sullivan, Pompe Disease Contributor

November 11, 2021

Can we take a second to appreciate health insurance? But just a second, though, because I think we can agree that the health insurance system isn’t perfect.

Pompe Columns

Daily Nutrition and Support on the Long Road From Diagnosis to Living With Pompe

My Daughter’s Fatal Struggle With Pompe, Then My Diagnosis With NMOSD

How Stress Can Become the Tipping Point for Pompe Patients

Rare Disease Patients Find Many Medical Facilities Are Not ADA-Friendly

How COVID Variants Affect Pompe and Other Rare Disease Patients

Pompe Disease Made Me a Jack of All Trades

Rare Diseases and Poor Mental Health Are Not Cause and Effect

Pompe Patients Must Share Experiences to Help Guide Treatment

Reflecting on the Long Road From Pompe Disease Diagnosis to Treatment

Pompe Patients Face Red Tape, Long Delays Covering Vital Medical Expenses

Want to read more?

How Cycling Saved My Life Before and After My Pompe Disease Diagnosis