Katie White talks on Medical Panel
Katie, 22, from Vermillion, South Dakota, was invited to speak on a panel as part of the University of South Dakota, Sanford School of Medicine, Center for Disabilities, LEND program. Katie was talking to medical trainees who are part of the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs that prepares trainees to assume leadership roles in their respective fields, by ensuring high levels of interdisciplinary clinical competence. Along with three other Rare Disease panelists, Katie discussed her rare condition, Myhre Syndrome.
Ines White, Katie’s mum talks us through the event.
“Katie first discussed her background information, and how our family are military, so we moved around whilst she was younger. She went on to discuss when she was diagnosed, how Myhre affects her and how we discovered the Facebook support group. She spoke about the first time she met someone like her at a mini reunion in Chicago and we then together talked them through some slides that we had prepared on what Myhre is, the main symptoms and the exciting things we’ve got coming up, like the Myhre Syndrome Foundation Virtual Conference.
After all the panelists had introduced themselves, they took turns answering the questions that the students had provided ahead of time. One funny moment came when the moderator tried to move to another question and Katie said "Excuse me, but we have not answered that question yet. I want to say something about that question?" Haha, Katie White in action!
I can't tell you how very special this event was for me personally. Katie was one of four presenters, so we got to listen to three other very Rare Disease panelists speak on the subject of different diseases. I was SOOO amazed at how attentive Katie was for those two hours. She had questions for me about the other diseases and as a mother and daughter we shared this amazing interaction. It brings tears to my eyes just to think how truly blessed I am to have Katie as MY daughter, regardless of her Myhre. SOOOO proud!”
Katie said the best three things she liked about being on the panel were. "1. I had some good laughs, with the students, and with my Mom. 2. It was important for the students to know that they must be like bulldogs when it comes to patient care, regardless of what they have. Don't give up and keep looking for answers. 3. I feel that it was important to share what Myhre Syndrome is, and maybe the students will go and do more research to help the Myhre Community".
From the Myhre Community, thank you Katie. Thank you for being such a brilliant advocate for Myhre Syndrome, you are an inspiration to us all and most importantly you are making sure more healthcare professionals know about Myhre. Your efforts will have a far-reaching positive impact as more and more people hear our stories. We can’t wait to see what you have planned next!