Tags » Rare Disease

Can't stop thinking about it

I wasn’t going to write about this but since I can’t stop thinking about it, I suppose I should.

I was at the dermatology doctor a few days ago.  517 more words


There's No Place Like Home

I have been away awhile.

Since the last update I did have to go back to the hospital and was there most of January.

Turns out, the rest of my body didn’t like my first cocktail.   153 more words

Blog Entries

Caregiving Was All I Ever Knew. 

I never was able to get a job as a young teen. Many kids when I was sixteen were getting jobs. My job was being home. 545 more words

Huntingtons Disease

AIH Making Headlines in Hepatology Report

Having a rare disease like autoimmune hepatitis (AIH) is trendy during February.  Why?  It’s the annual rare disease awareness campaign promoted by many patient advocate and medical research groups.  114 more words

Autoimmune Disease

Conrad and the sunflower

This story first appeared in the Information Point newsletter Our World in 2013, after an email arrived out of the blue. It told a touching tale of a chid born with myotubular myopathy and a sunflower. 255 more words


Sophia soccer girl

This story first appeared in the Information Point newsletter Our World in 2013, when Maria Mead Stokes told us about the opportunity her daughter Sophia had to play in the VIP soccer league.  379 more words


Rare Disease Strikes a Bronx Area All Too Familiar With Rats

The rare disease goes by many names. Mud fever, sewerman’s flu, swamp fever — those are just a few of the monikers for the illness caused by the bacterium Leptospira. 922 more words

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