Tags » Rare Disease

Going Beyond the Body

This is a new blog. However, because of Hurricane Maria, I had to abandon it quickly as if I had been bored with it. I’m not bored with it. 473 more words

Tarlov Cysts

Six-week-old baby believed to be youngest person with aHUS

“It’s been kind of moment by moment.”

That’s how Joel Reimer, the father of baby boy Harbour Remier, who has atypical hemolytic uremic syndrome (aHUS), takes things every day as he tries to keep his son alive. 344 more words


Remind me again, please

He is faithful.

He is good.

He knows pain.

This is temporary.

He promises a hope that won’t disappoint.

He keeps his promises.

He will… 679 more words

How Much Is That Doggie In The Window?

Please enjoy this post from a fellow chronic illness blogger.

I never, ever, EVER ask other people for advice. But they love to give it to me. 647 more words


Failed Cure Fast and New Challenges

Jackson didn’t pass the safety fast. He became unstable pretty quick. I cried quite a bit. So desperate for relief. The good thing is, he isn’t worse. 568 more words


Here We Go Again...

Long time no catch up on my running or my health. So here goes…
Last year I started writing a blog about my ‘running life in ruins’ that was never posted. 1,420 more words

8. Choose to hit "play"

I participated in a study conducted at the National Institute of Health (NIH) a couple of years ago to determine the disease process of Lymphangioleiomyomatosis (or… 1,029 more words