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  • Writer's pictureKaterina

Living With CMT - Chloe's Story



I was diagnosed with CMT when I was two and a half years old. I am the only one in my family who has it.



Introduction To Writer

Hi! My name is Chloe Goodman and I have CMT 1A. I’m from Southern Illinois and currently earning my associates degree at a local community college. I complete my classes online but I really enjoy college. I was very nervous to start college considering I’d need so many accommodations but it was so easy to get an accommodation plan! I’m still struggling to find resources and such to be able to attend a university. Aside from school I enjoy traveling, cooking, and making t-shirts.


CMT Journey


I was diagnosed with CMT when I was two and a half years old. I am the only one in my family who has it. Although I have grown up with this disease, it has progressed throughout my life. I grew up using a walker and being pretty independent. Around age thirteen, I began using my wheelchair primarily and now require assistance with my everyday tasks. CMT affects everyone differently and I have a more severe case.


I require assistance transferring in and out of chairs, my hands are weak causing challenges with my fine motor skills. I also have scoliosis and hearing loss as a result of CMT. A very prominent CMT symptom is curved feet & atrophied legs. I was blessed to have my feet reconstructed to make standing easier and pain free, but I do have the typical CMT legs.


Other typical CMT symptoms I live with include poor balance, curled fingers, weak muscles, nerve pain, and fatigue. As difficult as it can be being different than most people my age, God has blessed me abundantly, and without him, I couldn’t get through the pain. God has blessed me with many support outlets from family, friends, church, and the CMTA. In fact I have met one of my best friends through the CMT COMPASS group which has been a blessing.



Encouragement


One of my favorite Bible verses is Romans 8:28: And we know that all things work together for good to them that love God, to them who are called according to his purpose.




Having CMT is a struggle. But, I know that as a saved child of God, he’ll use CMT for his glory. The advice I would give to anyone with chronic pain would be to seek God first and trust his plan. Because even through the worst pain and darkest days, God is still good and worthy to be praised.






Chloe Goodman is 20 years old and lives in Illinois. Her future career is undecided as she is still trying to navigate life as a disabled adult. Chloe enjoys traveling, cooking, and making t-shirts. She is very excited to bring awareness this month!


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