Jennifer San

“My name is Jennifer San. I was first diagnosed with EHE in Dec 2017 after having a biopsy on two tumors that were removed from part of my left lung. I’ll never forget the day and the look on the doctor’s face when he gave me the news. When he opened the door to the room I knew by the look on his face the news wasn’t going to be good. His exact words were “All along I thought you had a rare tumor, but I wasn’t expecting you to have an even rare form of cancer”. The nurse came in next, to tell us about our next steps, and she said in all her 18 years in nursing she’s never seen this diagnosis.

My heart just broke and my husband just held me in his arms and told me everything would be ok and that we would get through this together.

I live in Weymouth, Mass which is just south of Boston. I have a 13 year old daughter and have been with my husband, for 9 years. I’m a Broker Commissions Specialist for a health insurance company. I’ve worked in health insurance for over 20 years.

I love cooking big family dinners for my whole family. We all just love to sit around the dinner table and laugh and joke with each other. I truly live for my family. My husband and daughter motivate me to keep the EHE fight going. They won’t give up on me and I won’t give up on them!

At this time there is not a lot of information about EHE and therefore it is being misdiagnosed.  EHE is a very complicated and unpredictable disease. People think just because I don’t “look sick” that nothing is wrong with me. Even if I feel good I can’t let my guard down because I never know what the next hour or day will bring. You might be feeling great and then out of nowhere be in tears with severe pain. You need to learn to Just Live with an unpredictable disease.

The EHE Foundation’s mission is so important to me because right now it’s the only organization who advocates for patients in finding a cure and developing a standard of care.

We have so many people get the wrong care because not a lot of doctors have the right training that is need to treat it. The foundation can help bridge this gap.

Your time and donation will go towards the vital research that is needed to help find a cure and to help develop a standard of care for treating this disease. The EHE Foundations doesn’t get any funding from the government or big corporations, even though we have people more and more people every year who are being diagnosed with EHE.”

 

 

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