World Rare Disease Day- F.I.R.E.S.

Today is World Rare Disease Day- so in honor of the occasion, I want to give you the basics on David’s condition.

FIRES (Febrile Infection Related Epilepsy Syndrome) is a disease in which a normally healthy person suddenly starts having seizures. Over the course of a few days, the seizures increase, causing the person to go into Status Epilepticus (a constant state of seizing). Usually, a fever will have occurred a week or two prior to seizures, but it may or may not be around when seizures present themselves. The seizures are considered refractory, as they cannot be controlled or stopped with normal anticonvulsants. Mortality rates of FIRES reach 30%, while those who do survive usually experience significant brain damage.

(https://www.ncbi.nlm.nih.gov/pubmed/28898171)

Even though life has been tough since his diagnosis, we are so thankful that David is not only surviving but, rocking life with this disease.

Check out the Rare Disease Day website to find out more about Rare Disease Day! https://www.rarediseaseday.org/

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