Patient Perspectives

CAD Columns, Patient Perspectives

A ‘Cold’ Experiment That Has This CAD Patient Thinking

By

Alithea Athans, CAD Contributor

Publish Date March 21, 2023

Since I was diagnosed with CAD, I have wondered what would happen if I was in an emergency situation.

ITP Columns, Patient Perspectives

When ITP Entered and Changed My Life

By

Kristy Coleman

Publish Date March 20, 2023

My diagnosis of a rare blood disease, immune thrombocytopenia (ITP), was made in November 2019.

ALGS Columns, Patient Perspectives

Managing ALGS in My Family: Anxiety and Uncertainty, Test After Test

By

Miranda Bradnick, ALGS Contributor

Publish Date March 15, 2023

Recently my daughter who was diagnosed with ALGS at the age of 3 underwent her first baseline brain scan.

CAD Columns, Patient Perspectives

CAD Has Many Sides and Some Don’t Make Sense

By

Alithea Athans, CAD Contributor

Publish Date March 14, 2023

What I have learned about cold agglutinin disease (CAD) is that it just doesn’t make sense at times.

AATD Columns, Patient Perspectives

How I Calm Down Other People With AATD

By

Alyssa Gloor, AATD Contributor

Publish Date March 14, 2023

The way I, a patient, talk with other people with alpha-1 antitrypsin deficiency (AATD) determines a lot of things.

Patient Perspectives, Pompe Columns

Being Rare and Balancing Normality With Everyone Else’s Standards

By

Bruce Campbell

Publish Date March 13, 2023

I have been diagnosed with Pompe disease, which is a disease that lacks the enzyme that breaks down the glycogen.

Patient Perspectives, Pompe Columns

The Effects of Insomnia on Pompe Disease Explored

By

Keyana Sullivan, Pompe Disease Contributor

Publish Date March 13, 2023

Even with Pompe Disease, my body learns to adapt.

MTC Columns, Patient Perspectives

Accepting When a Dignified Death Is Best

By

Christine Pudel, RN, MTC Contributor

Publish Date March 13, 2023

I was faced with a very rare type of cancer when I was diagnosed with medullary thyroid cancer (MTC).

AATD Columns, Patient Perspectives

This Patient With AATD Is Grateful to Live in the United States

By

Alyssa Gloor, AATD Contributor

Publish Date March 10, 2023

I have come across people with alpha-1 antitrypsin deficiency (AATD) who tell me they’re getting denied treatment for this very real condition.

ALGS Columns, Patient Perspectives, Uncategorized

My Son’s ALGS: Constant Worries and the Occasional ER Visit

By

Miranda Bradnick, ALGS Contributor

Publish Date March 8, 2023

Recently, my son, Jackson, who has Alagille syndrome (ALGS) had a trip to the emergency room (ER).