Growing Up with a Neurodegenerative Disease: Friedrich's Ataxia – Stephanie Magness

Like most young women, Stephanie Magness wanted to be like everyone else; she wanted to fit in with her classmates and have fun at school. But when she learned in 7th grade that she had scoliosis, she was taken on an unexpected decade-long journey of misdiagnosis. At age 22 genetic testing confirmed that Stephanie’s symptoms were caused by Friedrich’s ataxia (FA), a rare neurodegenerative disease that has no cure.

This week on the podcast, Crystal is talking with Stephanie about her FA diagnosis and the unexpected life transitions she’s made because of this progressive disease. Although losing some of her abilities related to walking and communication has not been easy, Stephanie has faced these challenges with the support of her community who have reminded her of God’s love in the most surprising of ways.

Friedrich's Ataxia Awareness Day is May 15. If you are facing a diagnosis of this rare disease, be encouraged by Stephanie's story. As she continues to adjust to life with a neurodegenerative disease, she takes comfort in the fact that God is in control and he his good. Even through her brokenness and the difficulties of FA, she can be used by him.

Resources:

Read more from Stephanie about the precious gift from her friend that allowed Stephanie to accept her inevitable transition to being a wheelchair user.

Find Stephanie on Instagram.
 

Questions or comments? Email Crystal at [email protected]
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Joni and Friends envisions a world where every person with a disability finds hope, dignity, and their place in the body of Christ. Founded by Joni Eareckson Tada, we provide Christ-centered care through Joni's House, Wheels for the World, Retreats and Getaways, and disability ministry training.

Find more encouragement on Joni Eareckson Tada's Sharing Hope podcast and her daily devotional.