>> OCTOBER IS ARTERIAL VENOUS INFORMATION OR A B M AWARENESS MONTH. NEVER HEARD OF IT.
WELL, IT’S A RARE DISEASE THAT
CREATES A CLUMP OF BLOOD
VESSELS AND CAN CAUSE ANEURISM
STROKES OR EVEN DEATH. JOINING
ME NOW TO BRING AWARENESS TO
THIS DISEASE IS ERICA CARNAGE
IN THE NO CHILD WITH THE
ANEURISM, AN AVM FOUNDATION.
GOOD MORNING, LADIES. THANK
YOU SO MUCH FOR JOINING US.
GOOD MORNING. LEARNING. SO
TELL ME WHAT IS A VM AND WHY
IS IT SO IMPORTANT TO KNOW
ABOUT IT?
>> WELL, AN AVM STANDS FOR AS
YOU HAVE THERE AND ARTERIAL
VENOUS MALFORMATION. AND ALSO
YOU MENTIONED THAT IT’S A
COMPLEX TANGLE OF BUT VESSELS,
SPECIFICALLY ARTERIES AND
VEINS AND THEY’RE MISSING THAT
CAPILLARY SYSTEM. SO THE BLOOD
RUSHES THROUGH THERE VERY
QUICKLY. IT’S IMPORTANT TO
KNOW ABOUT THEM SPECIFICALLY
BECAUSE THEY CAN CAUSE DEATH.
AND WHILE BEING EMERGENCIES,
THE SYMPTOMS ARE STROKE LIKE
AND OFTENTIMES THEY GET
IGNORED AND PEOPLE CAN DIE.
>>CORLEY PEEL: WOW. AN AVM IS
THE NUMBER ONE CAUSE OF
PEDIATRIC BRAIN BLEEDS AND
CHILDREN AFTER HEAD TRAUMA. SO
SHOULD PARENTS BE WORRIED?
>> IN MY MIND AND IN THE MINDS
OF MOST EXPERTS KNOW, AGAIN,
YOU ARE TALKING ABOUT A RARE
DISEASE, HOWEVER, BUT WE WANT
PEOPLE TO DO IS TO KNOW ABOUT
DISEASE. SO THAT IF YOU ARE
PLAYING FOOTBALL ON THE
BASKETBALL COURT OF THINGS
LIKE THIS IN THE FALL AND YOU
HAVE A CTE THAT IT’S IMPORTANT
TO LOOK FOR THOSE THINGS. BUT
MORE IMPORTANTLY, IF YOU ARE
HAVING SYMPTOMS OF STROKE,
WHICH WE KNOW ARE THINGS LIKE.
A VERY SEVERE HEADACHE OR FACE
DROOPING OR MANY CASES WITH
OUR YOUNGER AREN’T MOST. THEY
PRESENT 50% OF THE TIME WITH
THE LEAD.
>> WOW. SO, MY UNDERSTANDING
IS THAT YOU HELPED BUILD THE T
A A F YOUTH AMBASSADOR
PROGRAM. YEAH, YOU’RE A VM.
WASN’T IN YOUR BRAIN. WHY WAS
THIS PROGRAM WITH T A SO
IMPORTANT FOR YOU? WHAT WERE
YOUR AND REACHING OUT?
>> THIS WAS IMPORTANT TO ME
BECAUSE I GOT MY DIAGNOSIS
YEARS AFTER HAVING MY
SYMPTOMS. I HAD NO IDEA WHAT
IT WAS. AND WHEN I FINALLY
FOUND AT MY DIAGNOSIS OF
HAVING ENERGY OF THE NOW FROM
ATION, I WANTED TO FIND A
GROUP SIMILAR TO I WHO
SUFFERING WITH THE SAME
DIAGNOSIS BECAUSE IT’S A
DISEASE AND I HAD NEVER HEARD
OF HAVING IT AND NEVER KNOWN
ANYONE WHO HAD HAD REACH. AND
CALF WAS IMPORTANT TO ME
BECAUSE I WAS ABLE TO FIND
THAT THERE ARE PEOPLE WHO HAD
SIMILAR SYMPTOMS TO ME HAD
SIMILAR STORIES I COULD JUST
RELATE TO AND TALK TO AND
GOALS OF THIS PROGRAM. WE’RE
JUST FINDING OTHER PEOPLE WHO
MAYBE HAVE THE SAME DIAGNOSIS
AS ME WHO HAD SYMPTOMS FOR SO
LONG. THEY KNOW WHAT’S GOING
ON JUST TO BE ABLE TO REACH
OUT TO PEOPLE AND HAVE THEM
KNOW THEY’RE NOT ALONE LIKE
HOW I FELT WHEN I HAD MY
DIAGNOSIS.
>> AND I KNOW YOU RECENTLY
RECEIVED IS THAT A DECLARATION
FROM GOVERNOR DESANTIS
DECLARING OCTOBER TO BE A VM
AWARENESS MONTH IN THE STATE.
SO WHAT OTHER ACTIVITIES HAVE
YOU BEEN UP TO AWARENESS
>> IN ADDITION TO GETTING THAT
AT NATION FROM A STATE, I ALSO
GOT IT. AND CLAY COUNTY AND
VOLUSIA COUNTY MOST RECENTLY.
SO THAT’S REALLY EXCITING.
JUST GETTING THE WORD OUT.
LETTING EVERYONE KNOW ABOUT MY
DIAGNOSIS. WHAT’S GOING ON,
DISEASES THAT MAYBE THEY’RE
NOT AWARE OF? I’VE HAD SOME
SOCIAL MEDIA CAMPAIGNS GOING
ON AND I DO HAVE A FUN COUPLE
THINGS GOING ON SOCIAL MEDIA.
SO IF YOU FALL ALONG MY
JOURNEY, YOU’LL SEE A COUPLE
SURPRISES FOR YOU GUYS.
>> THAT IS AMAZING. SO REALLY
QUICK BEFORE WE RUN OUT OF
TIME, WHERE CAN PEOPLE GO TO
LEARN MORE AND CATCH UP WITH
YOU AND DINA?
>> FOR MY SOCIAL MEDIA, IT IS
ERICA CARNEGIE, 2 POINT. OH,
ON INSTAGRAM AND FACEBOOK AND
FOR THERE’S HALF ONLINE DOT
ORG AND ON INSTAGRAM, THERE’S
TAFT UNDERSCORE OREGON, TOUGH
FOR KIDS AND THEN FOR AN
E-MAIL. IF YOU GUYS ARE
CURIOUS ABOUT YOUR DIAGNOSIS
MAY BE SYMPTOMS YOU’RE HAVING.
THERE’S INFO AT HALF ONLINE
DOT WORK.
>> ALL RIGHT. THANK YOU SO
REALLY QUICK, DINA, WHERE CAN
PEOPLE CONTACT YOU? ACTUALLY,
ERICA, JUST MASTERFULLY. PUT
THAT OUT THAT’S IT’S GREAT OF
ITS DINA SPILLED. OBVIOUSLY
THE EYE AT HALF ONLINE DOT
ORG. AND I WE HOPE PEOPLE
EVERY SINGLE DAY WITH THEIR
DIAGNOSES, AS ERICA MENTIONED.
BUT MORE IMPORTANTLY, TO HELP
THEM FIND SECOND INDIANS MAKE
DECISIONS AND JUST GENERALLY
OFFER ONE-ON-ONE CARE.