Meet Janie, a true Texan with hemophilia who dreams of starting her own bleeding disorder support group.
1. Tell us about yourself.
My name is Janie. I am 18 years old and I am currently a senior in high school. I will attend college this fall and plan to major in Education. I enjoy playing my flute and hanging out with friends and family. I love my dogs, reality TV, and sour cream and onion potato chips. I live in west Texas where the sun is hot, cowboy boots are a must, and people lend a hand to their neighbors. I travel 3 hours, in each direction, to see my hematologist. He is wonderful and well worth the long drive.
2. What setbacks have you had along the way?
I was a young teenager when I was diagnosed with hemophilia. I was extremely self-conscious about my diagnosis. I was afraid of what my future would hold and what possible limits I would face. However, time and education helped me understand my condition. Hemophilia is only a part of me- it doesn’t define me. With proper care and support, I can live a full and happy life.
3. What advice would you give someone who needs motivation & encouragement?
My advice for someone who needs support and encouragement is to believe that bleeding disorders are manageable. Seek good healthcare and try to plug into a support group. You are not alone and you can manage your condition.
4. What is the most surprising thing you’ve learned about yourself?
The most surprising thing I learned about myself is that I am strong- Texas strong to be exact.
5. How do you give back to the community?
I plan on starting a bleeding disorder support group in my community. I believe support groups are vital to help educate and encourage those in need.
Want to Share your Story?
Whether you are a parent, sibling, friend, or loved one, we would love to hear your story. If you would like to participate, Please click here or email us.
