02/28/2022
Today is . According to the NIH there are approximately 7,000 Rare Diseases that affect about 25 to 30 million Americans. Not really that rare, huh?
The fact is that these are only statistics until it affects you...your friends...your family. I am the mother of a child who was born with a rare disease. Eli had Wolff-Parkinson White SVT, a type of Tachycardia that results from extra electrical pathways in the heart and can cause a very rapid heartbeat. Most of the time patients who have episodes can take medicines and make lifestyle adjustments that can help lessen these, but some episodes just happen for seemingly no reason and can even happen in their sleep. Most of the time symptoms are mild and sometimes an ablation can be performed to try to find any excess overactive pathways, but there is still much more to learn about the condition and how to treat it effectively and even the surgery doesn’t guarantee a fix since some excess pathways may not be found during the surgery. Most of the time life expectancy is not affected, but there is still that chance...even when they tell you not to worry about that...
The reality is that Rare Diseases change lives and families. We are forever changed because of Eli and because of his heart condition. Today is the day we raise our hands to bring awareness to these diseases so that more research can happen in order to give doctors better information and treatment options to share with these families.
To help raise awareness and continue research efforts for WPW SVT and other heart conditions, donations can be made to the American Heart Association.
Thank you for remembering our Eli. 💛
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