October 24, 2012

Presentation for Emory Med Students

Scott and I were very excited to have the opportunity to attend a genetics lecture at the Emory University School of Medicine where we helped as part of a presentation about Down syndrome. I cannot convey how amazing it was to have the attention of 160 soon-to-be doctors as we spoke about the joys and challenges of having a child with Down syndrome, as well as our thoughts on what doctors could do to help support us at the time of diagnosis and throughout the journey. It was such a great experience!

The lecture started with background on Down syndrome (Trisomy 21 or T21) and was followed by a speech by a lovely 30 year old woman named Katie who has T21 herself. Despite learning to talk at age three, Katie is the most amazing speaker! Her clarity of speech is perfect - probably due to her drama experiences and the need to memorize her lines. She has led an incredible and fulfilling life so far: she works, volunteers, acts in plays and musicals, travels, and is such a role model! She is even getting ready to move into an apartment of her own with support! Here is a video of her presentation:

After Katie's speech, three of us couples who each have a child with T21 spoke generally about our ups and downs, worries about the future, and how our lives have been blessed through our kids. The med students then asked us all kinds of questions such as:
  • How can doctors support us? 
  • How have things improved for those with T21 in past years? 
  • What are our greatest challenges?
  • What does insurance and/or Medicaid cover?
  • How do we balance life with (multiple) kids, therapy, and fun?
Afterwards, we all spoke even more candidly one-on-one and in groups with the med students and gave them the chance to play with our kids. It was adorable to see them play rock paper scissors with Chase, give him fist bumps, and let him sing into the microphone! Everyone asked excellent questions, showing they really took the lecture/panel to heart and had very positive responses to what we had to say. No doubt we made a lasting impression.

Wouldn't you love for your pediatrician and all of your child's doctors to know what you think the answers are for these questions? Wouldn't you just be thrilled to have all your child's doctors learning about how to better guide you through the medical and therapy jungle that can be Down syndrome, and don't you wish that your doctors were all engaged in pursuing a better future for people with T21, funding and following research and trial medicine, joining boards, and building friendships with people with Down syndrome?

Wouldn't you breathe a sigh of relief to know that doctors had accurate information about T21 and stopped automatically recommending abortion to pregnant mothers who receive this diagnosis, and wouldn't you cry tears of joy to see the abortion rate of babies with Down syndrome decrease from 90%?

I hope that more universities and medical communities do more lectures and events like we saw today, so that doctors across the country might have positive and accurate pictures of life with Down syndrome and be committed to working towards a brighter future for all involved. Many thanks to the Emory Down Syndrome Clinic for working towards these goals and putting this event on today!

1 comment:

  1. Oh how incredible!! We went to Emory last month to see the pediatric opthamologist clinic and have the forms to fill out to be seen at their Down syndrome clinic. I am hoping they can help us take steps both medically and educationally concerning Lil Gs medical care.