Tags » Rare Disease

Clinical Trials Bring Hope to Kids with Spinal Muscular Atrophy

More than a decade ago, the NIH’s National Institute of Neurological Disorders and Stroke (NINDS) launched a special project to accelerate the translation of basic scientific discoveries into new treatments for a rare and often fatal disease. 1,408 more words


Shrinking and acceptance

I call this post shrinking and acceptance because both of these things have happened with my desmoid tumour recently! My tumour has been stable since the start of the year, not to mention continually shrinking, and this has helped me accept it as part of my body that will probably always be there, but now I feel confident that it can be controlled and I am under great care. 503 more words

Rare Disease

This Scares Me!

I’m anxious. Tomorrow I travel 2 hours for a doctor’s appointment I made 6 weeks ago.  Six weeks! It’s not a surprise or out of the blue. 608 more words

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