Gaucher Disease - A 20 Year Diagnostic Journey

In this exclusive interview with Rare Disease Report, Tamara Issacs Ciocci describes the long diagnostic nightmare she went through to finally - at the age of 21 - get correctly diagnosed with Gaucher disease type 1. During that period, she was misdiagnosed with numerous conditions, including lupus and leukemia.

[@nessmastergengar4686]

Luckily I have been diagnosed early when I was 18 months old, and been on enzyme replacement since then. Currently I’m 18 and show no symptoms thanks to the treatment

[@mutonieliza7374]

Thx for shearing dear
I have kid wiz18 months wz Gousher dieses
Idont have any support up to know .advice me please

[@ellaemet3109]

thank you for sharing . you are pretty and brave .

[@gregphilipmusic]

A common thread with rare diseases seems to be the tunnel vision of specialists and paediatricians. Is this a problem with medical training?

[@marksilver26]

never ever trust your doctor, get at least three opinions for serious issues. The research on error with doctors in the US is frightening.

[@mutonieliza7374]

Thx for shearing dear
How can i got support
My kid also hv that problem
Advice me

[@juanreed6929]

Thank you beautiful woman for sharing your story.

[@brixtonkaysen6114]

I dont mean to be off topic but does any of you know a trick to get back into an instagram account??
I was stupid forgot my login password. I would appreciate any help you can offer me!

[@weathers1910]

wow

[@lester_ernesto]

👏🏽👏🏽👏🏽