We love our #TwoZebraKids, Eli & Jacob! But why the Zebra? 

Zebras are the symbol for rare diseases like IPEX. You’ll find this for two reasons. 

The first is that no two zebras have the same stripe pattern. Everyone is unique. You might notice that Jacob and Eli share a lot of the same symptoms but they develop at different times and to different degrees. This is similar to seeing two zebras – they may look alike but are different when you look up close. 

For example Jacob has had symptoms of alopecia for years, and for Eli it’s just starting… which inspired awesome new hairdos for all the Kulman Boys this week!

The second reason for the Zebra symbol is because of a common medical teaching;  “When you hear hoofbeats, you don’t expect to see a zebra”… meaning a med student will look for common issues when presented with a new case rather than rare conditions. However in the rare disease community we like to say, “ Sometimes when you hear hoofbeats, it really is a zebra.”

It took years for Ali and Dave and their large team of doctors to find the genetic irregularity that was the overriding condition for all of the boys’ symptoms and syndromes. IPEX is extremely rare – doctors have only identified around 300  people in the word with the condition,, and the Kulmans have two cute zebras working hard to not let it take over their lives. 

To rally behind the Kulmans we have created some COTA ZEBRA SWAG! T-shirts and wristbands are for sale and profits go to COTA in honor of Eli and Jacob. Please order one today through our events page! 

As part of IPEX both boys also have Ehlers Danlos Syndrome, which is a rare connective tissue disorder. The EDS Society put together this video on “Why the Zebra” that explains the symbol in more detail.