The EHE Foundation

Hi, I’m Maggie Cameron. I’m a wife, mother, cousin, designer and Crohn’s and EHE survivor. I live just south of Pittsburgh, PA. I love to spend time with my family, work (yes, I love it), run and ski!

My EHE story started with my diagnosis of Crohn’s disease in 2009. The imaging showed a “thing” on my liver. It appeared to be a tangle of blood vessels and the doctors diagnosed it as a benign hemangioma, and all agreed to keep an eye on it.

To deal with my recurrent, post-surgical Crohn’s disease, the decision was made to add Humira, a powerful immunosuppressive biologic therapy to my treatment. After six months on Humira and repeat imaging, doctors were surprised to see that the hemangioma had grown significantly and was now quite large and had taken over most of the left lobe of my liver. Humira was immediately discontinued and a liver biopsy scheduled. The tumor was identified as EHE – it was something that my GI doctor had never heard of. Tissue was sent to the Cleveland Clinic for confirmation since it was such an unusual and rare diagnosis.

My diagnosis was confirmed in early September 2011, right before my 40^th birthday. This was all very overwhelming and surreal. I Googled it, but all I could find was a Wikipedia entry and a few random mentions in some medical journals. The EHE Foundation hadn’t formed yet, and there was no Facebook support group. I was alone. At least that’s how it felt.

I was fortunate to be a candidate for surgical treatment. As I began to look for a liver surgeon, I found a photo of a transplant surgeon in Pittsburgh. He had a kind smile and a wore a bowtie. For whatever reason, I was drawn to him. I made an appointment with Dr. Wallis Marsh at UPMC. His demeanor was incredibly reassuring – he had resected someone with EHE 17 years prior! What are the chances of that? He joked, “My insurance agent has this. I resected her 17 years ago, and she’s still my insurance agent.” I felt incredibly lucky to have found a doctor who had seen this before and he was right in Pittsburgh. He was an angel for me at a time when I felt very lost. Since then, I’ve had two additional liver tumors ablated, and I’m now following with a Dr. Melissa Burgess at Hillman Cancer Center in Pittsburgh.

For me, living with EHE is pretty manageable. The toughest part is convincing people outside of our community that it is serious and unpredictable. I walk this weird line of feeling guilty because I’m certainly not a sick as some people with EHE and feeling unsettled because that could change at any time. With no clear treatment path, “watch and wait” seems to be the best treatment for me right now.

The formation of the EHE Foundation gave me an incredible sense of gratitude. Here were women who were dedicating their precious time and energy to really advancing the medical discussions around rare Sarcomas and especially EHE, to try to find a treatment or a cure. I am eternally grateful for their continued hard work. It’s absolutely humbling. This is a group of passionate people who have significantly changed the conversation and awareness around EHE and rare Sarcomas. Because the EHE Foundation is so connected to its community, donating to it has a profound and measurable impact on the people and families touched by this disease.

“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.”