Introduction

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Introduction

Postby kdahlem » Wed Jan 02, 2019 8:24 pm

Hello everyone and Happy New Year!

I would like to introduce myself - I am Kristen Dahlem and I am personally affected by CCM. I was diagnosed about 15 years ago as a young adult and am living with my brain lesion that is located near the basal ganglia. I have also been a volunteer with Angioma Alliance for a few years and am happy to announce that as of today I am working as the Clinical Research Specialist for the organization. I am thrilled to be on board to help drive our mission while getting to know you all and supporting cavernous angioma research. I am also a registered nurse and in 2017 became certified as a functional medicine health coach. I live near the beach in NY, love being active, traveling, and living a healthy lifestyle.

I look forward to getting to know you and wish you a happy and healthy 2019! :D

Warmly,
Kristen
kdahlem
 
Posts: 2
Joined: Mon Dec 31, 2018 5:01 pm

Re: Introduction

Postby Michelle2000 » Sun Jan 06, 2019 10:06 pm

Welcome, Kristen!
18 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
Michelle2000
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Joined: Thu Dec 02, 2010 7:40 pm

Re: Introduction

Postby Elizabeth » Sat Feb 16, 2019 10:03 pm

Welcome,

I also had an angiomas near my basal ganglia. Mine was large, bleeding, and overlapping many areas...it had to go. I'm a nurse too, not working anymore though since my surgery in 2010. Thanks for all that you are doing! Hoping someday, there will be a cure other than brain surgery!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles


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