Cavernous angioma patients. We look so normal, don’t we? We seem kinda quirky, right? Not understanding something easy is because we aren’t paying attention maybe? Not doing much on a day just means we’re lazy perhaps? And a quiet person is simply an introvert, correct? Put them all together as one and we still seem pretty normal, don’t we?
However, I agree, we appear normal … until we don’t. Until we slur our speech, forget what you told us a mere second ago, or get the appearance as if we’ve been beaten up simply because we concentrated for too long in a row.
Cavernous angioma patients are dealing with weak surfaced raspberry-like blood vessels in the brain that leak blood every so often. I’ve had three major bleeds in my lifetime and umpteen micro bleeds.
We Cavernous Angioma patients are constantly dealing with pain, symptoms, and however those help form our personality for the day. You and I may be having the same experience together, but most of the time we aren’t having the same day. Cavernous angiomas are something that you can not forget because they never forget you. It’s part of who you are, and almost like your brain is another person you have to take care of.
When the micro bleeds happen you have a smaller recovery, with brain pains and numbnesses to name a few. Big bleeds are more than hard to get through. Our damaged selves are fighting to get through recovery. Flailing through the battle to get back up as we learn to walk again. Weary as we contend in the jousting match against our minds to win back our wits, memory, and sanity. Yet, time and time again, I hear of people making their way past their bleed to their new normal. Battle scars and all.
Because yes, we’ve been through hell, but hell hath no fury like a soul reborn. And Going through this gives us strength enough to believe that we can do it all again, if or when the next time comes around.
This is why we do our Angioma Alliance Anywhere Walks every year. And this year new intelligence has been formed. Studies have been done. Patients have tried out a medication called atorvastatin. The trial looks at the effect of atorvastatin on reducing the risk of future bleeds from cavernous angiomas. Finding out whether atorvastatin is beneficial in reducing recurrence of symptomatic hemorrhage is of critical importance to our community. Now, with your help, we can find out new ways to fight and shed some on this disease. Please sponsor me in this year’s Angioma Alliance Anywhere Walk so I can walk for healing.