A Medical Zebra

 I knew my girl was special. I knew it by the way she smelled. Just awesome and one of a kind. 

Yesterday while at one of the special doctors Lulu sees they found out how special this little human is. 

There is a term Mom has heard before and had shared with her niece just a few days ago. Never thinking it would apply to our girl. 

You see during medical school most students are taught :
"When you hear hoofbeats, think horses, not zebras"

A medical zebra is commonly understood to be a rare disease or condition. Medical students are taught to assume the easy and simple or common explanation not the crazy rare awesome sounding one.     

The problem is...people like my girl can be overlooked and taken for granted. Mom said lots of people ignored ALL the symptoms by taking each one and assessing it rather than putting them together. 

Lulu has a rare...very very rare...quirk in her genes...that's the inside of her body not the kind you wear...just in case you were unsure...

This quirk causes rashes, fevers, joint pain, and other inflammatory symptoms. These symptoms often occur after exposure to cold or damp air or a drop in temperature. However, symptoms may also show up for no clear reason. 

The kind of quirk Lulu has will be explain more when Mom knows more...right now we are waiting for test results to tell us what sub-type Lulu has. 

 Mom said with this particular quirk there are only 300 cases in the United States. But also said that a lot of people are undiagnosed...it's hard for doctors to know the patient has this condition because it's so rare.

Luly will get a shot every day to help her and the special doctor increased her pain meds. We should know more soon. 

I know I know this is confusing. When Mom is ready to tell the world then I will write the name of this quirk. 


Love
Beezus