KSG Information & Support

Kniest, Spondylometaphyseal Dysplasia, Spondyloepimetaphyseal dysplasia and related conditions, info & support group.

I just found out my baby has Spondyloepiphyseal Dysplasia! What do I do?

Congratulations on your new baby! This diagnosis can be frightening, and we have resources to help.

Learn about raising a child with dwarfism:

Prepare for your medical visit a with a specialist:

  • Find doctors with experience working with dwarfism
  • Get copies of your child’s medical records.
  • Write up a list of questions for the doctors: what exactly is my child’s diagnosis? How was this diagnosis made? What symptoms should I look for? What test does she need when, such as hearing tests, neck X-rays?
  • Bring a friend with you to take notes and make sure you ask all your questions.
  • There are lots of potential issues and it’s OK to feel overwhelmed. Remember that not every baby has every possible symptom! Also know that things will get better!

Find your community:

Please email us at support {at} ksginfo.org for anything! We check the email about once a week.