Podcast August 12-12-12 With Project Member Sarah Levis- Brain AVM

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This month’s 12-12-12 project medical podcast with Sarah Levis.

What type of mindset do you have to be in to get up each day, relearning how to walk, feed yourself, brush your teeth and learn to carry on after a brain arteriovenous malformation causes a stroke?

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Sarah gives us a glimpse into her life and openly shares her medical story. Thank you Sarah for taking this journey with me. You are an awesome woman!

Much love,
Marissa

A Tangled Web Arteriovenous Malformation Weaves

When your arteries and veins abnormally tangle, a web of deceit begins brewing forming AVM nidus.

Shout out to Mayfield clinic for helping break down the complexities of arteriovenous malformation (AVM).

This is what I was able to understand…

It’s understood that blood flows from the heart, through your larger arteries to the body’s cells.

Arteries: Carry oxygen-rich blood away from the heart to the body’s cells

The arteries branch until they form into a capillary.

Capillary: Any of the branching blood vessels that form a network between the arterioles and venues.

A bed of capillaries is formed, and the powerful exchange of oxygen and nutrients takes place.

That blood travels away from the capillary bed back to the heart through your veins.

Veins: Return oxygen-depleted blood to the lungs and heart.

The AVM tangled web of blood vessels and arteries connect directly LEAVING OUT the critical capillary bed. So you get arteries that are in a feeding frenzy and enlarged veins form.

An AVM can rupture. The bleeding also can be held responsible for a possible stroke.

The risk of AVM bleeding is 2 to 3% per year. Death from the first hemorrhage is between 10 to 30%. Once a hemorrhage has occurred, the AVM is 9 times more likely to bleed again during the first year.

I found a GREAT VIDEO of Dr. John Hudson and Dr. Ted Larson giving a brief overview and discussion on AVM’s and treatment modality.

It’s 8 MINUTES OF SOLID AVM EDUCATION. Definitely worth a listen.

(Heads up: volume is low!)

Much love,
Marissa

Accessibility In Practice

How far would you be willing to go to make your content or service available to as many people as possible?

Would you be willing to record a video blog of yourself reading out-loud over 175 of your blog posts making sure you don’t leave out individuals with impairments who want access to your content?

Let me introduce you to Sarah Levis. Sarah is actively making her message available to ANYONE  that desires access.

I will be interviewing Sarah Levis AKA GirlWithTheCane at the end of this month.

Sarah has had not one but TWO STROKES before the age of 35. She developed what is called a Brain Arteriovenous Malformation(AVM).

When you move form, “pretty healthy” to dealing with a rare medical condition your perspective changes. You identify with and often take on the role of “disability advocate.” A light switch turns on, and you start envisioning a world that embraces ACCESSIBILITY FOR ALL.

How can I convince you that your service, device, website, SHOULD be accessible?

You don’t have to get sick or become disabled to “see the light.” Have a little faith in those that have gotten sick and or disabled and are making the daily scarifies.

Trust me when I say EVERYONE WANT’S ACCESSIBILITY!

You may think moving from “pretty healthy,” to ” chronic disability” is a far fetched idea and not scheduled into your life plans. I pray that is the case. BUT life happens and when it does you will appreciate those that are putting accessibility into practice.

Repeat after me….

“Completing this project will take a while! But I believe that it’s worth doing.”

Check out Sarah’s first video blog post:

Much love,
Marissa

That’s it?

“That’s it” …. HAS to be the two words that come to mind after a Google search result returns minimal information on your medical condition.

The 12-12-12 journey has affirmed that rare medical conditions don’t get the press coverage, and financial backing to foster awareness.

What type of information is available to you when you are diagnosed with a condition that AFFECTS 1 in 200-500 PERSONS?

The previous statistic confirms why I had a somewhat difficult time locating a support awareness t-shirt and bracelet for this months 12-12-12 project.

That’s why I believe it’s crucial to embrace and support charitable nonprofits and support groups.

Here are two GREAT examples:

The Aneurysm and AVM Foundation

AVM survivors network (Where I located my awareness bracelet! Thank you Kim and Jaclyn McDermott)

Buy an AVM Bracelet- Help Raise Awareness! - AVMSurvivors.

Buy an AVM Bracelet- Help Raise Awareness! – AVMSurvivors

The reality is:

Person is greeted by a specialist that quickly rattles off complex information and often times the individual and their families are bombarded by a floodgate of information.

After you digest the diagnosis, or in this case SURVIVE “sudden hemorrhage, or bleeding into the brain, a form of stroke,”  your going to want more  information about your condition.

Realizing and appreciating the importance of nonprofits and support groups I have moved from the words, “Thats It” TO “Thank God”!

I would like to leave you with 3 AVM facts from The Aneurysm and AVM Foundation

About 5-10% of AVMs are discovered by accident while the individual is being tested for other unrelated medical problems.

AVMs arise in the brain, spine, lungs, kidneys and skin. Brain AVMs are the most common.

Most patients present between the ages of 20 and 60 years of age. The mean age is about 35-40.

Much love,
Marissa