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Slide Notes

Other Names for this Disease
* Cavernoma
* Cavernous angioma
* Cerebral cavernous hemangioma
* Familial brain cavernous angioma

Source: http://1.usa.gov/1FjjxRf
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What is CCM?

Published on Nov 18, 2015

Cerebral Cavernous Malformations


What is

Other Names for this Disease
* Cavernoma
* Cavernous angioma
* Cerebral cavernous hemangioma
* Familial brain cavernous angioma

Source: http://1.usa.gov/1FjjxRf

A collection of small blood vessels:

  • In the brain or spinal cord that are irregular in structure and enlarged.
  • That become dilated, then weakened, and leak blood.
  • Can press up against structures in the central nervous system
Cavernous malformations can occur anywhere in the body, but usually produce serious signs and symptoms only when they occur in the brain and spinal cord (which are described as cerebral).

Source: http://1.usa.gov/18HJpZM
Photo by tim caynes


  • "Imagine walking around with hundreds of these lesions in your brain
  • Never knowing when a hemorrhage or seizure will occur.
  • And feeling like a time bomb is ticking in your head
  • Now imagine knowing that about your child...
Since infancy Izak exhibited many concerning developmental delays and extreme hypotonia on the left side on his body.

When Izak was 11 months we contacted Help Me Grow Agency. HMG recommended we see a Neurologist, Physiologist, and Geneticists after an initial evaluation.

Before Izak's 1st birthday he was diagnosed with Cerebral Cavernous Malformations.

Who Does CCM Affect?

  • .5% of the worldwide Population.
  • 40% aren't diagnosed until aged 30.
  • 25% are diagnosed in the childhood years.
  • Large population of the Latin community particularly in the New Mexico area.
There are two forms of CCM: familial and sporadic.
* The familial form is passed from parent to child, and affected individuals typically have multiple cerebral cavernous malformations.
*The sporadic form occurs in people with no family history of the disorder. These individuals typically have only one malformation.
Source: http://bit.ly/1CdryI2

*The disease was common among Spanish settlers in New Mexico in the 1580s. Since then, it has been passed down through generations. New Mexico has the highest population density of the illness in the United States, and thousands of New Mexico Hispanics may be affected.
Souce: http://1.usa.gov/1GJsa5Z
Photo by wwward0

Symptoms of CCM can include:

  • Headaches
  • Seizures
  • Paralysis
  • Hearing/Vision Deficiencies
  • Bleeding in the Brain
  • Focal neurological deficits (Vision, speech, and movement problems).
  • Extreme and very rare cases death.
Photo by mrlins

What Does CCM

Look like, on the inside?

Cortex View

Picture Source: http://bit.ly/1EiZ2CB

What do people

with CCM look like?
This is a picture of my son, Izak. He is a happy, energetic 4 year old who charms anyone who has the pleasure of interacting with him. He has been involved with our local Developmentally Delayed Board and has received services since he was 11 months old.

Though Izak's father had no neurological issues growing up a MRI taken in his 30's revealed he had CCM. We were assured it was nothing to worry about and the neurologist thought it was a sporadic CCM.

After the genetic testing it was confirmed that Jim has Familial CCM as Izak has all three of the mutated genes. My daughter and son both have a 50% chance of passing CCM along to their children.

Izak's treatment has consisted of ST, OT, & PT 2x's week. Corrective surgery has always been out of the question. We see a Neurologist & Physiologist every 6months, a geneticist, ophthalmologist, and cardiologist 1/year.

Our hope is that the thru diet and careful observation Izak will overcome this diagnosis and lead a fantastic life filled with wonderful adventures.


CCM caused death in 1999.
Florence Griffith-Joyner aka FloJo, who had the title, "Fastest Woman in World" in the 80's inspired many with her dedication to her sport, her fashionable running gear, and gorgeous nail art.

FloJo passed away at age 38 from complications due to a Full Grand Mal Seizure. What was originally thought to have been epilepsy was undiagnosed CCM. For more details click this link: http://bit.ly/1DpN1h0

Alberto Contador, Winner...

of three Grand Tours of road cycling & CCM suvivor!
Surviving a seizure in 2004 doctor's discovered Alberto had CCM. After a 3 hour surgery and extensive recovery Alberto went on winning races.

To learn more about CCM Contact:

1.) Angioma Alliance (http://bit.ly/1Eot8Vi)
2.) National Organization for Rare Disorders
(http://1.usa.gov/1FjjxRf )
3.) Brain Vascular Malformation Consortium
4.) Dartmouth-Hitchcock.org (http://bit.ly/1EiZ2CB)
5.) Genetics Home Reference (http://1.usa.gov/1GTlGoz)
6.) AVM Suvivors Network (http://bit.ly/1Eibeki)

There a lot more support groups and information online, these are the sites I have found most helpful.

You are not alone and you don't have live life afraid!!

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