Looking for Oregon CCM families to connect to!

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Looking for Oregon CCM families to connect to!

Postby oleblue » Mon Feb 15, 2016 7:52 am

We have been looking for quite a long time to find people in our area that have this disease. We have 3 family members who have Cerebral Cavernous Malformation on the brain and brainstem. My husband and our daughter have had brain surgery . My husband had surgery at Stanford Medical Center and our daughter has her surgery at OHSU. We so want to talk and create a means to communicate with each other in our area. We live north of Portland Oregon in a town called Warren and or St. Helens. We would love to meet and exchange journeys of what you have gone through and also share our journey. You can contact us through this forum or email me at oleblue1@msn.com. My name is Barbara, my husband Dave and our daughter Angela and our son Tom have CCM since first diagnosed in 2003.
oleblue
 
Posts: 36
Joined: Mon Aug 01, 2011 3:47 am
Location: Warren Oregon

Re: Looking for Washington/Oregon CCM families to connect to

Postby oleblue » Fri Aug 26, 2016 6:35 pm

Thought I would "Poke" again to see if there are any Oregon/Washington CCM people. Our family is interested in a "Meet & Greet & Share Stories. We reside in Warren Oregon. Feel free to contact me. My email is oleblue1@msn.com.

Our family has 4 generation of cerebral cavernous malformation. My husband Dave, our daughter Angela, our son Tom and Dave mother have this genetic disease. Dave, Angela and Dave mother all had brain surgery to stop bleeding in the brain. We didn't find out that this was a Family Disease until 2003. Pandora Box was open and we have been educating ourselves, connecting through Angioma Alliance and AVMSurvivors/CCM Survivors.

To say the least it is a long road. We are strong now.

Always a shout out to Patti G. ( Our angel), Connie and all the staff @ Angioma Alliance.

Wishing you peace ,

David & Barbara Curtis
Warren, Oregon
oleblue
 
Posts: 36
Joined: Mon Aug 01, 2011 3:47 am
Location: Warren Oregon

Re: Looking for Oregon CCM families to connect to!

Postby Kev » Mon Dec 18, 2017 3:54 pm

Hi, saw your post and just wanted to say hello. I've just been recently diagnosed and am from PDX area. I've been reading how few people actually have this, but it really drives the point home when I looked for anyone in the area. I hope all is well with you, would love to hear about it.
Kev
 
Posts: 5
Joined: Sat Dec 02, 2017 3:09 am

Re: Looking for Oregon CCM families to connect to!

Postby oleblue » Mon Dec 18, 2017 6:44 pm

Hi Kev,

My name is Barbara and my husband name is Dave , who has Familia CCM of the brain and brain stem. It is so wonderful to hear from you. We have been members with Angioma Alliance since 2003. Patti G. was our first contact on this site. She was our guardian angel.

We have 4 members in our family who have familia CCM, 2 have had brain surgery, our daughter and my husband. Our daughter surgery was on her right temporal lobe in 2003 with OHSU, my husband Dave was in 2011 right temporal lobe and frontal lobe at Stanford Hospital in California.

We are very familiar with the disease. Angioma Alliance has been a GREAT resource from clinical, emotional, general education, physician, etc.

We live currently in Salem, Dave & I have been married for 47 years. We have 3 children all grown and married and with children. Our daughter Angela and son Tom have CCM as well and they live in Beaverton and St. Helens.

We would really enjoy meeting you . Patti G and her husband Rick are located in Medford. I hope as your journey begins, you see that we are there with you. Where do you live? Is your sporadic or familia CCM?

Stay in touch
Barbara & Dave
oleblue
 
Posts: 36
Joined: Mon Aug 01, 2011 3:47 am
Location: Warren Oregon


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