Living Rare and Searching For Hope

The story of Sarah

I didn’t know I had a rare disease until I had lived with it for over 10 years! Misdiagnosis and horrible “treatments” had left me hopeless and scared to go to the doctor. I just knew I couldn’t keep on letting it grow.

Last year, I finally went to the doctor for the first time in 5 years. She did a biopsy and the results were the same thing that I had been misdiagnosed years before. I was crushed. But it needed to come off, so surgery was scheduled. I was excited anyway. I would get to be “normal.” Finally. 

To my surprise the pathology report came back as Vulvar Lymphangioma. What a shock. I had never  even heard about it before. So then began my Google searches. Well that got me hardly any information due to it’s rareness. But it was something. 

At my two month post op appointment my Dr. Discoverd it was coming back and fast. She sent me on to the oncologist who did another surgery on me. And well this week was my 6 week post op and it’s back again. 

It’s hard to think about living with something that Dr.s cannot cure. Let alone tell you what causes it, or give you any confidence in their attempts to treat you. 

So many people live like this. Waiting for the next advancement in science, praying that it will be in their life time. So for now we press on celebrating the small things and dreaming of a day when we can finally say “I’m cured!”