Leah Alstin has a rare disease called Friedreich’s ataxia.
Friedreich’s ataxia is a disease that progressively damages and affects the nervous system. Poor coordination is one of the early symptoms she experienced. She noticed that she was struggling to walk up the steps at her school.
Leah believed that she had an ear infection but her test results confirmed Friedreich’s ataxia. Leah stated that the disease did not have a big effect on her life but as time went on, it worsened.
About 4 years ago, she broke her ankle and spent three weeks in the hospital. She lost all of her muscle tone as a result. After that point, Leah has had to use a walker for assistance and this was hard for her to accept. Leah felt that she lost her independence. The walker made her feel somewhat insecure as well as self-conscious because strangers would always stare at her. She avoided using it at first, but now uses it all the time. It is her new normal.
Leah second-guessed if she would still be a good mom to her children. She was scared that the disease made her feel like less of a mother, wife, and person. With the support and love of her friends and family, Leah learned a very important lesson.
She stated, “It’s okay not to be okay.”
Now, Leah is spreading awareness through her social media campaign called #showusyourshoes. She chose shoes because she wanted to appeal to everyone. In the campaign, she takes pics of shoes and shares her struggles with the disease. She wants others to know about the condition. She hopes that it will stop some people from staring. Her campaign has even been adopted by the Friedreich’s Ataxia Research Alliance in the U.S.
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