Category Archives: Rare Disease Day

Rare Disease Day: February 28 2017

Did you know that 1 in 10 Americans in the U.S. have a rare disease?  Out of those 30 million people, more than half are children.  Frank is one of them.
Eosinophilic (ee-oh-sin-oh-fill-ick) associated diseases are just a few of the 7,000 rare diseases and disorders.  If it affects fewer than 200,000 people, it is rare.  Frank has what is called Eosinophilic Esophagitis.  Try saying that three times fast!

Eosinophilic Esophagitis is an allergic inflammatory disease that causes above normal amounts of white blood cells, called eosinophils, in the esophagus.  This disease is usually generated when the body is exposed to certain foods.  

Research for a cure is going strong and there are promising treatments on the horizon.  For now, most treatment consists of food elimination, steroids and proton pump inhibitors (PPIs) such as Prevacid.  Frank is treated with a combination of all three.  Although there are cases where they just do not work.  Therefore, the patient is sometimes treated with formula and a gastrointestinal tube.  Only 5% of the known 7,000 rare diseases have treatments available and nearly 80% of research funding is donated by the families and their loved ones.

Rare Disease Day is about raising awareness for everyone rare.  This years theme and slogan are “research”…

With research, possibilities are endless.

You can help raise awareness today!  Frank challenges you to post a picture to social media wearing your favorite pair of jeans.  Tag #wearthatyoucare and #rarediseaseday2017 in support of Rare Disease Day and Global Genes Campaign.  Don’t forget to tag Frank and me in your posts!  We would love to see them on Instagram @thestepmomster and Twitter @The_StepMomster.  

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