My Child May Have a Rare Disease, but I Still Dream Big Dreams for Her15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease, but that doesn't stop me from dreaming big... By Elle Cole2 min readBookmark for later
The Pain of Misunderstanding Recently, I thought I had found a group of friends who would stick by my side, who understood what I was going through, or at least tried to. I live... By Tatiana Corbitt2 min readBookmark for later
How to Advocate for Yourself in Social Situations With a Rare DiseaseLearning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up for oneself in social situations. Here are a... By Jessica Hanson3 min readBookmark for later
My Child May Have a Rare Disease, but I Still Dream Big Dreams for Her15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease, but that doesn't stop me from dreaming big... By Elle Cole2 min readBookmark for later
The Pain of Misunderstanding Recently, I thought I had found a group of friends who would stick by my side, who understood what I was going through, or at least tried to. I live... By Tatiana Corbitt2 min readBookmark for later
How to Advocate for Yourself in Social Situations With a Rare DiseaseLearning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up for oneself in social situations. Here are a... By Jessica Hanson3 min readBookmark for later
My Child May Have a Rare Disease, but I Still Dream Big Dreams for Her15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease, but that doesn't stop me from dreaming big... By Elle Cole2 min readBookmark for later
The Pain of Misunderstanding Recently, I thought I had found a group of friends who would stick by my side, who understood what I was going through, or at least tried to. I live... By Tatiana Corbitt2 min readBookmark for later
How to Advocate for Yourself in Social Situations With a Rare DiseaseLearning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up for oneself in social situations. Here are a... By Jessica Hanson3 min readBookmark for later
Calling Out with GraceI try to approach life by considering others' perspectives, not just mine. Sometimes, though, I fail at this. As a rare disease advocate, I'm not free of or above unintentional... By Jenny Jones2 min readBookmark for laterReactions0reactionsComments0 comments
Disclosing Rare Disease NeedsWhen living with a rare disease, how often do you disclose your needs? Daily? Weekly? Monthly? Living with a rare disease usually means that other people aren't well-informed about my... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
It's Just the Way You AreI 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...Bookmark for laterReactions0reactionsComments2 comments
Dietary ChangesHi, 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...Bookmark for laterReactions0reactionsComments8 replies