I might have a rare disease and not sarcoidosis

I might not have #Sarcoidosis, I always wondered why I don't look like anyone that has sarcoidosis. 

Everyone that has sarcoidosis looks normal but I have lost lots of facial mass and I look different than my original self. I might have another genetic disorder.

When I look at people with Sarcoidosis, I've never seen anyone with a face like mine or changes to their body like I have exhibited.

I still walk around every day were people give me strange looks wondering what's wrong with me and I have not found anyone that looks like me.

Pictured : my son and I.

So today I woke up with my sister sending me a text message stating to me that I might not have what I've been diagnosed with.

2012-2013 hospital stay at Huntington Memorial Hospital 

I always knew that I might not fully have sarcoidosis ( but that was my diagnosis at the time) or that I have some other issue with my health because the doctors during diagnosis said that there was an 85% chance that I had the disease. 

I am very grateful that my sister is a medical doctor with a focus on Internal medicine. I know many other people who have genetic disorders or any other illnesses do not have such an opportunity. 

I'll keep you all posted. Thanks to my MD sister for thinking about my case #Genetic #raregeneticdisorder 

These new details will be added to my upcoming book from beauty to flaws. 


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