David Fighting F.I.R.E.S.

World Rare Disease Day- F.I.R.E.S.

World Rare Disease Day highlights David's struggle with Febrile Infection Related Epilepsy Syndrome (FIRES), a condition causing uncontrolled seizures following a fever. FIRES presents high mortality rates (30%) and often results in serious brain damage for survivors. Despite these challenges, David continues to thrive, showcasing resilience in the face of adversity.

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by Desirae
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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 syndrome 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 rare syndrome.

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

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