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Living for the Moment: Doing the Unexpected With Pompe Disease

It was 2018, and I turned 50 years old in March. The following month, we lost our oldest son to a brain tumor. He was only 22 years old. It...

By Dwayne Wilson

4 min read

Cost of Living With a Rare Disease

Rare diseases are expensive. Anyone "living rare" likely knows that firsthand. Without a correct diagnosis, you may receive inappropriate care. Or you might miss a chance to prevent disease progression...

By Editorial Team

3 min read

Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors

I once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider corrected me with the disclaimer that being a squeaky wheel can cause doctors...

By Jenny Jones

3 min read

Living for the Moment: Doing the Unexpected With Pompe Disease

It was 2018, and I turned 50 years old in March. The following month, we lost our oldest son to a brain tumor. He was only 22 years old. It...

By Dwayne Wilson

4 min read

Cost of Living With a Rare Disease

By Editorial Team

3 min read

Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors

I once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider corrected me with the disclaimer that being a squeaky wheel can cause doctors...

By Jenny Jones

3 min read

Living for the Moment: Doing the Unexpected With Pompe Disease

It was 2018, and I turned 50 years old in March. The following month, we lost our oldest son to a brain tumor. He was only 22 years old. It...

By Dwayne Wilson

4 min read

Cost of Living With a Rare Disease

By Editorial Team

3 min read

Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors

I once told someone about their healthcare, "You have to be the squeaky wheel." Later, a provider corrected me with the disclaimer that being a squeaky wheel can cause doctors...

By Jenny Jones

3 min read

Why I Made My Home Wheelchair Accessible Sooner, Not Later

"Why do you think you would need wheelchair-accessible doors in your home?" I answered simply that I was previously required to obtain a wheelchair and utilize it to participate in...

By Jenny Jones

3 min read

3comments

Rare Diseases and Preparing for an Emergency

Medical emergencies are certainly no fun, especially when a rare disease is in the mix. However, being prepared for a potential emergency can make the nightmare of a situation slightly...

By Jessica Hanson

3 min read

2comments

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Dietary Changes

Hi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an elevated level of phytanic and pristanic acid in...

By haveagojojo

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It's Just the Way You Are

I just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went to doctors, or was taken, and never really...

By CommunityMember596d93

2 min read

2comments

Living for the Moment: Doing the Unexpected With Pompe Disease

Cost of Living With a Rare Disease

Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors

Living for the Moment: Doing the Unexpected With Pompe Disease

Cost of Living With a Rare Disease

Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors

Living for the Moment: Doing the Unexpected With Pompe Disease

Cost of Living With a Rare Disease

Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors

Why I Made My Home Wheelchair Accessible Sooner, Not Later

Rare Diseases and Preparing for an Emergency

Find Your Condition

Popular in the Community

Dietary Changes

It's Just the Way You Are

Featured Collections

Understanding Adult-Onset Still's Disease