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Kayla Jorgensen: Epithelioid Hemangioendothelioma

Posted on January 07 2015

Kayla Jorgensen: Epithelioid Hemangioendothelioma
After a month of having mono like symptoms and a series of tests on June 3rd 2014, Kayla was diagnosed with Epithelioid Hemangioendothelioma commonly known as EHE.

What is EHE? EHE is a EHE is a rare vascular cancer that arises from the lining of blood vessels. It can appear anywhere in the body, but common sites are the liver, lungs and bones. Many patients have to undergo several liver resections, surgeries and possibly transplants. Sometimes, there is nothing doctors can do.

Kayla has confirmed liver tumors and a spot on her lung that is very small that has not been biopsied yet. In July and August, Kayla had several tumors treated through ablation (cryo and micro). These treatments so far have been successful! We are very thankful every day!

EHE is very rare, and there is almost no research on it. All of this has been very scary for Kayla and her family. When they go to doctors, doctors often haven never heard of EHE. Kayla and her family have to BRAVE and spend lots of time researching, meeting other EHE patients and being advocates. We are lucky for the treatment we have gotten at Nebraska Med.

Before Christmas 2014, Kayla heard news that she would have to undergo her first liver resection. She is also in her first year of teaching.

Kayla's goal is to raise awareness for EHE and to share her story with others. Wear a bracelet to raise awareness for EHE - a rare cancer that in fact affects special people that Kayla has gotten to meet.

The money raised from Bravelets will help Kayla and her journey and a portion will be donated to EHE Research in hopes that someday, there will be a set foundation or treatment plan for individuals battling EHE.

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