Ask Kate! Tibial Dysplasia in Patients with NF1.

In this "Ask Kate!" video, Kate discusses tibial dysplasia, or pseudarthrosis, in patients with neurofibromatosis type 1.
If you have a question or comment about neurofibromatosis for an upcoming "Ask Kate" video, please include it in the comments below, or email Kate at [e-mail] Kate Kelts, RN, is the Patient Support Coordinator at the Children's Tumor Foundation.
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Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.
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[@WhitePhantom93]

Hi! My name is Aidil from Singapore.I was diagnosed with NF1 when I was 14 & now I’m 26. I had gone thru many difficulties & obstacles my entire life.I am currently working a nurse in a hospital.My main issue is there is no support for NF in my country.I wanted to bring out awareness & education for NF but I don’t know the process.I also been having severe back pain on/offset and causes numbness on my limbs.. and NF also affects me many more! I hope to make a change in ppl life w NF

[@childrenstumor]

NF awareness is such an important issue, I hear from NF Fighters like yourself living around the world struggling to help their friends, co-workers, family members, and communities understand NF. If you would like to discuss this further please feel free to reach out to me directly! ~Kate, [e-mail]

[@doncardoza7663]

I had my right leg amputated below the knee because of this at the age of 8 - February 22, 1979. My parents tired for years to save it. Despite all this, I am doing quite well!

[@childrenstumor]

Amputation is a very difficult decision for any parent or individual, thank you for watching and for sharing some of your story with us Don! ~Kate Kelts

[@christinajackson2662]

Thank you for this video, Kate. My 6yo son has been diagnosed with NF1 with tibial dysplasia and naturally I’m a worried mama. We discovered a fibula fracture last July and 10 months later after no signs of healing, his doc believes it never will. Our focus is protecting his tibia now, and he’s been in a brace since December, with Vit D & calcium supplements along with us keeping a healthy diet and maintaining reasonable activity. In looking through research, I came across promising studies on the use of Lovastatin to help maintain and even rebuild bone density, which I’ve brought to his doc for review. Is that something you’re familiar with and have you heard whether it’s being used in other patients?

[@aashikhan2904]

Mam hello mam i am surfing from neurofibroma i cant understand what can i do mam plzzzzzzzz u tell me and plz help me mam i am from indian and plz reply my question i am wait ur reply thanks

[@childrenstumor]

Hello Aashi, please email me at [e-mail] I am aware of doctors working in NF in India that I can connect you with. Thank you!

[@deveshthakur7517]

I'm also from india Agar apne inse contact kiya ho to plz doctor ke bare me bata dijiye jinke bare me ye bol rahe hai