Because Brains Shouldn't Bleed®
~A cavernous angioma is a mulberry-shaped abnormal blood vessel with thin, leaky walls found mostly in the brain and spinal cord
~1 in 500 people have at least one cavernous angioma in their brain. Most people will have no symptoms
~The most common first symptom is seizure (50%), followed by hemorrhage (25%) and neurological deficits (25%) like blurred vision and weakness in limbs
~Cavernous angioma is hereditary in about 25% of people who have the illness
~The hereditary form of the illness can happen in any family. However, there are several groups of people that are at higher risk for the hereditary form: descendants of the original Hispanic population of New Mexico where the mutation began in the mid-1600’s, the Ashkenazi Jewish population, and a European-American group with roots in the deep South and Oklahoma
~Brain or spinal surgery is the only current treatment for the illness, but there are a number of medications under development to strengthen the vessels and stop more cavernous angiomas from forming
This is something that runs in my family. Multiple people in my family have been tested and confirmed, including my own father. Most don't have symptoms, however one member in my family does, please read her story below.
This is my cousin, Jessica's story:
In 1995 I was hospitalized at 5 years old with a blood clot in my brain, when they went in to take it out - nothing was there. For years we didn’t know what truly caused the blood clot or where it went, until 20 years later in 2015 I was introduced to the world of Cavernous Malformations, or Raspberries as my sister calls them. I had gone to UT Southwestern’s ER when my PCP called me back and said my Thalamus was bleeding. I had a MRI done because my right side went numb, vision was strained and I had a massive pressure in my head. I have 4 major Raspberries and multiple small ones: left frontal lobe, right frontal lobe, temporal lobe and the major pest, my left thalamus (smack dab center of your brain near all the nerves). After Thanksgiving of 2015 I was episode free until April of this year when my right arm and face went numb again, another MRI my Cavernoma has grown. I had started feeling better by June but then again in July I started another episode. Not only is there a feeling of nerve damage (numbness, weakness, burning sensation, being able to feel nothing and everything at the same time) but this also inhibits me from working at a normal pace, it’s harder to place words with what I’m thinking and I just don’t feel 100% aware. This rare condition has no rhyme or reason to simplify it - we don’t know how we get these Cavernomas, we don’t know what causes them to bleed and we don’t know how to stop them. This has left me feeling out of control of my own life until recently when I realized I have the control to make a change. To bring awareness to those around us and to raise money for research. Please join our team in walking for the second annual Colorado Superhero Walk in Denver in your best superhero costume. If you can’t make it please prayerfully consider donating, any amount is appreciated.
September 21, 2019 8am-12pm
Berkley Lake Park
4601 W. 46th Ave
Denver, CO 80212
REGISTRATION IS FREE! RECEIVE A T-SHIRT IF YOU DONATE/RAISE A MINIMUM OF $35!