Anyone in Maryland, DC, VA

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Anyone in Maryland, DC, VA

Postby Lisstanley » Fri Jun 22, 2012 4:10 am

My father has a developmental or congenital venous malformation coupled with a cavernous malformation in the right thalamic region. He has recently sufferred from two back to back hemorrhages resulting in loss of sensation and double vision on his left side of his body. In any event, I would like to see if there are others' in the MD, DC or VA area that want to get together as a support group to discuss our situations and to support each other. I joined this group in March and requested peer support but didn't hear back from anyone. It is very scary and we are told my Dad is not a candidate for surgery or gamma knife because of the location of his malformations. I was just reading on NIH's site that they have or are testing the use of doxycline as a preventive measure in studies but don't see an outcome. Just wondering if anyone has heard of any drug therapy to help decrease the chance of further bleeds.. In any event, please let me know if you are out there because we feel really at a loss at this point and would just like to talk with others' that are going through the same thing... Thanks.
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Re: Anyone in Maryland, DC, VA

Postby blueangel » Mon Jun 25, 2012 6:50 pm

I am new to all of this but I saw your post and wanted to say hi. I'm in Mount Airy.
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Re: Anyone in Maryland, DC, VA

Postby dercelia1987 » Fri Jul 06, 2012 8:03 pm

First off, I'm sorry to hear about your situation; I too, am new this whole situation and it's very aggravating to know that this is something that I will always have to deal with. I live in Stafford, VA (about 35 min south of DC) so if you get a support group up and running; I'm in! Good luck!
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Re: Anyone in Maryland, DC, VA

Postby earthntrees » Sun Oct 07, 2012 11:12 am

I live in Conowingo, MD up near the PA line. I work in Baltimore. I have had 2 Cavernous Angiomas removed, 4 still in my brain and 1 visible in my arm. I was lucky and had my massive hemorrhage when I was 15 and a couple miner ones when I was 18. I just get monitored now. The experience has led me to learn forms of healing work which includes Reiki, herbs, and other Shamanic practices.
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Re: Anyone in Maryland, DC, VA

Postby Amy13 » Tue Nov 13, 2012 4:06 am

Hello, yes I live in darlington, md. Hope all is well and you continue to heal:)
Diagnosed on Oct 19th 2010, bleed around pons
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Re: Anyone in Maryland, DC, VA

Postby Bikergirl29 » Tue Oct 01, 2013 11:33 pm

I live in Bethesda, MD and would be interested in meeting others. I was diagnosed in 2003.
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Re: Anyone in Maryland, DC, VA

Postby 2torrey » Tue Sep 09, 2014 8:15 pm

Check out the Zack Brown 5k in Edgewater, Md October 5.
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Re: Anyone in Maryland, DC, VA

Postby Connie Lee » Wed Sep 10, 2014 1:47 am

Thanks, 2torrey! I'm trying to get a dinner together in Annapolis Saturday, October 4th - the evening before this year's Zach Brown 5K in Edgewater. Please message me if you're interested!
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Founder, Angioma Alliance
 
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Re: Anyone in Maryland, DC, VA

Postby rmterp » Sat Jul 23, 2016 6:54 pm

Hey all, I was recently diagnosed and live in Arlington. I'm looking to meet up -- have you gotten together at all?
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Re: Anyone in Maryland, DC, VA

Postby Connie Lee » Tue Aug 09, 2016 4:44 am

It's a little ways off, but we have an event in the Annapolis area the weekend of October 29-30th. On the 30th, the Zach Brown 5K for Angioma Alliance will be held at Camp Letts in Mayo, MD starting at 9 am. There's always a good turnout - 200 or more people, most of them friends of Zach Brown's family. The evening before, on Oct 29th, the folks who are in the area and directly affected by cavernous angioma will meet for dinner. We haven't decided on a time/place yet, but if you message me in October, I will be reminded to post details here.
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Connie Lee
Founder, Angioma Alliance
 
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Location: Norfolk, Virginia


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