Living With DADA2

Managing Your Health with DADA2

Once you have a diagnosis of DADA2, you or some members of your family may be referred to a major medical center that offers specialized care. You may begin to meet with doctors who have in-depth knowledge to treat some of the features of DADA2. These may include rheumatologist, immunologists, neurologists, and hematologists as well as other specialists. One advantage of working with a specialist is that he or she will likely be familiar with the latest research and clinical knowledge to manage your DADA2 symptoms. If you do not receive a referral, consider asking your doctor if this would be helpful.

The DADA2 Family & Friends Facebook Page

Life with DADA2 needs community.  Check out the Family & Friend closed Facebook group that is regularly updated with ideas, questions, and tips on managing everyday life. Please remember that every patient is unique.  Any medical advice you receive on this page should always be discussed with your doctor. 


Your Care Team

It takes a team of doctors to help you navigate everyday life. Below is a list and how they can interact with your care.  Oftentimes, you can ask your medical center for a patient care coordinator to help this team work together.

Making Injections Easier

Taking TNF inhibitors with a needle stick can be difficult, especially for children. We hope these tips help.

  • Magic Cream – Lidocaine and prolicaine topical anesthetic to numb around the injection. This usually requires a prescription from your doctor.
  • The Buzzy Bee – A buzzing device that dissipates the pain of injection and also distracts the child. You can purchase it or something similar on Amazon and explore the company.
  • Cooling Pack – Apply after an injection to provide extra relief. Again, there are many options on Amazon that work well for kids.

Kids' Corner

Being a kid with a rare disease can be hard, so we wanted to give you a few ways you can make life a little easier. Have an idea? Send it to us to feature here!

Kelsey Hates the Needle

Kelsey Hates the Needle by Mary Wagner

Written by the grandmother of a DADA2 patient, Kelsey Hates the Needle helps kids find their courage in the face of all of the medical appointments and tests they have to endure.

Buy it on Amazon.

Jose Saves the Day

Jose Saves the Day by Jennifer Connell

Written by the mother of a DAD2 patient, Jose Saves the Day helps kids normalize when they have a medical issue that makes life different for them.

Buy it on Amazon.