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Stroke and Moyamoya Disease Survivor

Stroke and Moyamoya Disease Survivor
Stroke and Moyamoya Disease Survivor

I am a survivor of multiple TIA's and I have a rare disease called moyamoya . I am always in fear of dying....

Hello my name is Yulemny Colombo I am 32 years old and recently had my first EDAS on my right side on October 25, 2011 in New York Presbyterian Hospital (NYC) . I was diagnosed with moyamoya Disease in 2005 after a series of MRI/MRA and CT Scans . In 2003 I started to suffer from headaches I was always told it was migraines even when I would end up in the ER they would just give me medications and more medicationss not one time did they decided to do any imaging. In 2004 I went in for an actual MRI only and I was told I had suffered multiple TIA's , the neurologist I was seeing did not know why and all she did was give me medications for seizures, chronic migraines among other medications that I did not take.I decided to change to a different neurologist when I met my current neurologist Dr. Joshua Wiley at New York Presbyterian Hospital The Neurological Institute he told me what I had was moyamoya Disease I was 7 months pregnant with my second child I was so afraid. That day my life change for ever and I mean forever . It all went down hill i started to suffer from panic attacks because I thought I was going to die, anxiety kicked in depression name it I had it all together,years passed I continued to get worst my memory is not good my strength on my left side is less, I forget people I have known for years , I forget where I am going , places and names. I decided to not give up and started telling my story educating people of what I had Thanks to a couple by the name of Joshua Moody and Jennifer Moody they were able to take me through the steps of what I was feeling and what I would feel with moyamoya Disease and a group we all have that was started by Kristy Coleman called moyamoya Family on Facebook where we support each other and share our pain and concerns. I had my surgery thinking I would be better but nope I am not I still suffer from TERRIBLE headaches joint pains, blur vision, can not concentrate, I get lost in my conversations, I take long to speak. f I can not take my girls to the park because the heat sends me either to bed in pain or to the Emergency Room, I have numbness on my left side I drag my foot. I will need a second brain surgery but I am still at high risk of have strokes.So many things, my sister in 2011 suffered a Grade 5 ruptured Aneurysm in the brain she survived, my mom has a brain Aneurysm, my 8 year old daughter has multiple out pouching sacks in her brain. so many things but I still have hope , the only good thing that has came out of this is my artistic side , I make jewelry all handmade this has helped me with depression and anxiety although I try not to show my disabilities to my clients and family but face it I can not lie to my self . On September I will be walking for the Latin Faces Breast Cancer Awareness Walk and to be honest I don't know if I will make it simply because of the lack of oxygen I have. I know with my husband Mike Rijo , family and friends who will be there I think I can make it. I am trying to set up a support group here in NYC. I am hoping that if you read my story and you know someone please let them know that having awareness is the the key to everything. So many people might have moyamoya Disease and TIA"s and Strokes and are not awareness of the symptoms simply because they are lacking awareness .
Thank you all for reading this and showing support for us and others.
STOKE and Moyamoya Disease AWARENESS "Lets have AWARENESS and learn how to live longer"

 

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