Rare Kids: Living with Cavernous Angioma now available

Discussions about the illness, treatments, doctors, etc.

Rare Kids: Living with Cavernous Angioma now available

Postby Connie Lee » Mon Aug 17, 2015 8:29 pm

Angioma Alliance has created a book for children, age 9-14, with stories of kids who are affected by cavernous angioma and their siblings, told in their own words. The book is now available to buy online at http://angioma-alliance.myshopify.com/.

Feel free to purchase extra copies for other members of your support system, school library, etc. :)
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
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Re: Rare Kids: Living with Cavernous Angioma now available

Postby Teetee » Sat Nov 26, 2016 3:29 am

My 11 yr old niece was recently diagnosed with a cavernous malformation in her brain It was found "incidental" for work up for a hand tremor she has had. My sister was told there was evidence of a small prior bleed on MRI but basically just monitor yearly with MRI or sooner if symptoms develop. My sister is very anxious about certain activities she is involved in. She was heavily involved in gymnastics but now dances 5-6 times per week and does some aerial flips in dance routines. Is this safe? We are so confused. Neurosurgeon said Let her live a normal life with no restrictions..... Any feedback appreciated.
Teetee
 
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Re: Rare Kids: Living with Cavernous Angioma now available

Postby Elizabeth » Mon Nov 28, 2016 12:43 am

Welcome,

Im sorry youve "joined our club", but glad u found us. Be sure to read the newly diagnosed section on the main site...lots of good info. We are not doctors so obviosly, we can not give medical advise, but i would suggest seeking out more opinions if i was ur niece's mom. Basic resrictions are generally, no blood thinning medications like advil, asprin, or aleeve...etc. No rollercoasters or scuba diving. While i think it could be a delicate balance: i would like to think if i was a mom with an affected child i would want my child to be able to live the least restricted life without causing harm. I probably would try to avoid "headstands", or too much upside down pressure on her head. Dancing would be good, not sure what you mean by arials....is that upside down....i would avoid that personally. Any other specific questions, we will try to help? Take care!
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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Re: Rare Kids: Living with Cavernous Angioma now available

Postby MeghanB16 » Wed Apr 19, 2017 5:12 am

I was diagnosed with a cavernous angioma when I was 10 that was found by a brain bleed. Once I got out of the hospital, I was also told that there are no restrictions. Im a roller coaster lover, so the only thing holding me back was my physical weakness. I am now 16, I had the cav mal successfully removed almost 10 months ago, and I have lived a complete normal life except for my slight lateral foot drop. Every case is different, but as for myself, I have never had any problems by being active. I wish her luck in her journey and please let her know that she is not alone.
MeghanB16
 
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Re: Rare Kids: Living with Cavernous Angioma now available

Postby Joannaj » Sun Jul 02, 2017 2:37 am

I spent many years with headaches till they found the angioma after a seizure when I was 13. I was operated at 16.. since then I have lived a normal life like the dr prescribed (I'm currently 29 own my own business, graduated from college, well traveled, healthy and engaged to be married). My sister was also diagnosed at around 13 but unfortunately her angioma is too close to her brain stem to operate so dr ordered to check it annually.. it's been over ten years and she has also lived normally.. her only complain is random headaches..my grandmother was recently diagnosed as well and she's 81 so that gave us more hope that will be able to live a LONG normal life. As you can tell ours is hereditary. I hope this give your niece and family some hope that she can live a normal life.
Joannaj
 
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Re: Rare Kids: Living with Cavernous Angioma now available

Postby Elizabeth » Mon Jul 03, 2017 1:53 am

Welcome Joannaj,
I'm glad to hear that this dx is not preventing you from following your dreams! Living a long healthy life is a dream for most everyone and sometimes this dx may seem like a road block along that path. Thanks for sharing your successes and those of your family. Its a good idea to register on our patient registry if you want to be a part of the cure. The research is ongoing and the more of "us" we have in a database, the better. Check out the registry and get yourself signed up, then try to get as many affected family members signed up too. Take good care!
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
Moderator
 
Posts: 1550
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Rare Kids: Living with Cavernous Angioma now available

Postby Elizabeth » Tue Jul 04, 2017 3:30 pm

Here's the link to the registry in case you're looking for it:

http://www.angioma.org/registry
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
Moderator
 
Posts: 1550
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles


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