Finding Inspiration in Being Rare

A Journey in Advocacy

Greta obtains NET awareness day proclamation at Connecticut state house.
Greta obtains NET awareness day proclamation at Connecticut state house.

Greta Stifel isn’t just “rare,” she’s triple “rare.” After being diagnosed with Carcinoid Cancer, she simultaneously developed Carcinoid Syndrome, and recently Mast Cell Activation Syndrome (MCAS).  Greta has faced multiple life-threatening complications from her conditions, such as acute angioedema attacks, anaphylaxis shocks, and extreme hypertension. Instead of letting these experiences bring her down, she channels them into action.

Annually, the last day of February is Rare Disease Day. It is a day to raise awareness about the impact of rare disease.  Greta is active on this day and many others since her NET cancer diagnosis.

“I could have settled onto the couch, but I wanted to make a big difference,” says Greta. She got the news in September 2015 and was on the steps of city hall by November the following year where she sought a proclamation for NET Cancer Awareness Day for her town—and then her state—Connecticut. As the first rare NET cancer patient in her state pursuing policy change, she did not stop there.

Greta also wants to increase awareness about NETs among health care professionals. Like many NET patients, Greta’s diagnosis was missed, misdiagnosed, and treatment delayed, while the cancer spread.  Currently, she is advocating for state-level policies to increase physician education on rare cancers and to increase screening in at-risk populations. Sharing her story publicly is one way she hopes to bring NETs into the spotlight. She uses her very unique medical experiences to affect positive change within the medical community, general public, and government. She hopes to motivate people to take better care of themselves and to be their own advocates.

Greta does not want her illness to define her. So that no one else endures what she has, Greta’s working to increase awareness and education with urgency; her cancer is stage four and has metastasized throughout many organs. She wants to be a catalyst for change and encourages others to find their voices.

As a financial advisor for 30 years, Greta is grateful for nonprofits like NETRF that join the cause. “People should aspire to give to NETRF where your money can support research for a cure.” It is all part of her philosophy to “do more, love more, be more, give more, and leave a legacy.”

Despite some swelling and stiffness from MCAS, Greta plans to be at Connecticut’s state capital for Rare Disease Day 2018 and the National Institutes of Health (NIH) on March 1st.  As in the past, she will push back the pain in search of greater gain—awareness, education, and equity for rare diseases.

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Daiva

Wow! Go Greta Go! Thank you for all of your tremendous accomplishments & success in raising NETs Awareness for all of us in the NET community. You are very very inspiring & powerful. I want to do this in my town & state too! (Where do I start?) Stay strong!

I will help you…please call me at 203 882 1170

Thank you for your comment.

Julie Harris

So proud of you Greta. Keep pushing forward. You are making a difference. XO

Thanks Jules..appreciate your comment…call me anytime 203 882 1170

Jeff

Greta, you are doing great work in spreading the word on Carcinoid Cancer. So many of us were misdiagnosed by doctors. By the time it was found (in my case 4 yrs), the cancer has metastasized. Please keep fighting and sharing your knowledge with others. Thank you

Hi jeff..thank you for your comment
Call me.or email me anytime..wpuld.love to hear from you.

203 882 1170

Finding Inspiration in Being Rare