Were you diagnosed in childhood? How did having a rare disease shape you? If you are a caregiver, share about your little warrior!
Jenny Jones Member
Last Updated:
I was diagnosed with my rare diseases when I was 8 and 10. I had a very difficult time coping with all my medical experiences and it wasn't until I agreed to attend counseling as a teenager that I began to start processing and learning healthier coping skills. These experiences are what ultimately led me to my passion of helping others navigate their chronic illness.
Elle Cole Member
Last Updated:
, thank you for sharing. As a caregiver, I think counseling should be standard for children living with a rare disease. I am so glad to hear that you appreciated your experience.