Steps for Neutropenia

Moving forward one step at a time

by Vicki VanArsdale, MS

Natalya Pelz is taking part in the Steps for Neutropenia virtual race this month to help raise awareness about neutropenia and to give others like herself a platform to share their diagnosis.

“Living with neutropenia can be alienating. We shouldn’t have to feel like we’re on an island shouldering our struggles because others can’t grasp the concept of the diagnosis,” Natalya said. Her experiences have changed her, and she’s thankful for having this virtual event as a catalyst for honest and open discussion. Natalya feels empowered to continue to advocate for and speak about her health.

The ups and downs of living with neutropenia inspired her to participate in this unique event. “For so long, I felt I was the only one experiencing this, and it’s difficult for a young woman,” she said. Her quest to be “normal” compelled her to travel to the tip of South America against doctor’s orders. She contracted hemorrhagic E. coli in the Patagonian backcountry without adequate resources to care for her. She survived this life-threatening situation but has been through many other challenges.

“You have to laugh about the life of a neutropenic,” Natalya said. There are countless infections, doctor visits, medical tests, and hospitalizations. The fatigue, emotional and physical pain, financial toll, insurance hassles, and missed events can be isolating. The anger, tears, and never-ending questions about what the future holds for her health are what drive Natalya forward. Each step in this virtual race represents the journey everyone living with neutropenia is taking. Her journey began with her diagnosis 10 years ago; she leads an active life and continues to look forward instead of dwelling on the past.

At the time she was interviewed for this article, Natalya had already walked more than 62 miles. Her dog joins her on some of these walks. Surely, they’ve made even more progress by now. Natalya encourages everyone with neutropenia to keep talking. “Just because you can’t see it doesn’t mean it’s not there.”

Join us for our 3rd Virtual Event!

Registration begins September 15th!

 

 

‘Steps for Neutropenia’ is a virtual race to connect your family and friends across the world to help raise awareness about neutropenia and raise funds to keep it strong. Your contributions will enable us to provide education, support, and connections to experts for children and adults with chronic neutropenia.

The virtual event takes place anywhere-wherever you are and takes place from Octiber 1, 2020 through October 31, 2020. Set a target to reach 10,000 steps each day! You can run, walk, bike, dance, knit, choose a video (free ones on YouTube), read, or create your own path to supports those with neutropenia and the network stay strong! Just be sure to stay safe!

Our goal is to connect with 2,000 friends and raise $15,000.

Register for our 3rd virtual event. Pleaset note: registration begins September 15th. 

‘Steps for Neutropenia’ is a virtual race to connect your family and friends across the world to help raise awareness about neutropenia and raise funds to keep it strong. Your contributions will enable us to provide education, support, and connections to experts for children and adults with chronic neutropenia which is often a trying journey marked by baffling infections, emergency room visits, and the desperate search for a physician who understands. The National Neutropenia Network depends on support from the friends and families of those whose lives have been forever changed and challenged by this rare disease.

Choose your favorite activity and connect with your family and friends! You can create a team as well and ask them to join and support this great cause. Feel free to choose any activity of your choice-walking, swimming, knitting, reading, etc. We want everyone to be able to join in the fun!

For participants that raises at least $150 for ‘Steps for Neutropenia’, you will receive a key chain from the National Neutropenia Network.

Share with family & friends. You can participate as an individual or as part of a team. Once you have created your individual or team page, share with everyone and help us meet our goals.

Raise awareness and support for those who suffer from neutropenia!


Thank you for making a difference!

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