Cerebral Cavernous Malformation

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Cerebral Cavernous Malformation
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    Megan Loden

    Parents of Children With Rare Diseases Aren't Superheroes

    In no time at all, I went from the twins’ mom to the brain surgery twins’ mom. My teen twins were diagnosed with a rare genetic disease called familial cerebral cavernous malformations. They have several lesions throughout their brains that form, grow, and can bleed over time and had surgery to remove a few lesions that were bleeding and threatening their lives and ability to function. It was one of those moments that completely changes the course of your life. New worries of genetics, headaches, seizures, strokes, paralysis, and brain bleeds. I worried about these things morning, noon, and night. Mostly at night. I spent a lot of time at night doing research. When your child has a rare genetic disease, you won’t find a whole lot of information readily available on the internet. I scoured. I read papers and watched lectures. I threw myself into the rare disease parenting world headfirst. I kept working and researching. Heck, I became the chair of the Arizona Angioma Community Alliance and made it my mission to raise awareness about this disease. Education is key! Since their diagnosis day, well-wishers and prayer warriors have reached out in droves. At least at first. I smiled politely and tried my best to explain that they won’t get better. Surgery isn’t a cure, it’s a treatment, and quite frankly, I’m sick of saying “well, at least” when it comes to either of my daughters’ health. One night, after a particularly long day of therapies and scans to prep for another surgery, someone said something that I believe came from the very best intentions. It was a comment meant to be taken as the deepest compliment. Needless to say, I wasn’t (and still am not) in a place to receive this comment the way it was intended. A well-meaning mom from the school said, “I could never be as strong as you if it were my kids. I don’t know how you do it.” Saying that you just don’t know how we manage or that you wish you could be as strong as we are is kind of a slap in the face. I mean, really. Do you see any other option for us? Do you realize how hard it is for us? Do you think you would somehow be more affected than I am? If I stop for more than a few seconds to really think about the gravity of my girls’ diagnosis and what that means for us and them, I literally struggle to breathe. Every time I spend more than a few seconds in passing thinking about my girls’ lives and how everything has changed, I feel like my heart is actually breaking into a million pieces in my chest. It is just shy of unbearable. So, I don’t. I don’t think about it in that way. I think about the appointments, the scans, the meds, the surgeries, the symptoms, and the day-to-day struggles they face. I mother them through these challenges the best way I know how and I don’t think of the rest. If you were their mother, you would, too. Honest. I’m not a superhero. I’m not better than anyone. I’m not stronger than anyone. I’m a mother with no choice. I don’t get to have a say in any of this. My girls are depending on me to help them learn to navigate adulthood with their diagnoses. I don’t get to fall apart. Believe me, if that were an option, I would have long ago. But mothers, people really, we do what we have to. We put one foot in front of the other and we move forward. I am no different than any other mom on the planet. Promise. So what can you say instead? “This must be so hard for you and your family. I am so sorry for what you are going through and ready to help any way I can.” And then actually offer a way to help. If you know there is a big surgery day coming, prep a casserole and drop it off instead of reminding them how brave they are. I don’t see myself as brave. I see myself as a determined mom. I will do anything I can for my children, and falling apart just isn’t an option. Some days, I wish it were.

    Silvia Pittman

    New Netflix Series 'Away' Highlights Rare Disease

    What happened: Netflix’s new series “Away” showcases the reality of living with a condition that affects close to 1 in 200 people. The series follows astronaut Emma Green, played by Hillary Swank, who is the commander of the very first mission to Mars. Her husband, Matt Logan (Josh Charles), lives with cerebral cavernous malformation (CCM) and has a brain bleed just before her launch. The drama series premiered Sept. 4 and currently has one season available. Hilary Swank and Josh Charles star in Away, an epic story of love and sacrifice from the visionary who brought you Friday Night Lights and Parenthood. pic.twitter.com/HJN1kzhXM9— Netflix (@netflix) August 10, 2020 The Frontlines : Cerebral cavernous malformation disease is a relatively rare disease that causes “caverns” to form along the vascular network of the brain and spinal cord. These malformations can bleed and cause severe neurological symptoms or even death. Neurological symptoms can include seizures, headaches, paralysis and cerebral hemorrhage. However, it’s possible that close to 40% of people with these malformations will never have symptoms or be diagnosed. The condition encompasses cavernous angiomas and cavernous hemangiomas. The diseases can happen sporadically but it can also run in families. The disease is more likely to be inherited if the patient has multiple lesions. Familial cases are thought to be caused by a mutation of one of the CCM1 (KRIT1), CCM2, or CCM3 (PDCD10) genes. Familial incidences account for about 20% of cases. Children with a parent who has CCM have a 50% chance of also having the condition. Treatment often involves surgery although several medications are under development to improve the way blood vessels function and prevent additional lesions. Get more on rare disease: Sign up for our weekly newsletter. A Mighty Voice: Our contributor, Candelaria Romero, shared her experience being diagnosed with a cavernous angioma. She said, “Being told that you may not wake up from a risky brain surgery or that you’re never going to walk again without a cane can be seriously detrimental to a person’s mental health. As someone who ran four miles a day, I couldn’t imagine not being able to walk on my own. But I have learned through this tumultuous journey that a person’s strength, determination, and support system can make a world of difference.” You can submit your first-person story, too. From Our Community: What is something that keeps you going? Other things to know: CCM is just one condition that can cause bleeding in the brain. Here is what Mighty contributors are saying about living with conditions that cause cerebral hemorrhaging: How I’m Navigating Depression After Brain Injury What Having a Stroke Taught Me How to take action: You can watch the trailer for “Away” below and learn more about CCM and resources available by visiting the Angioma Alliance.

    Community Voices

    Im so stressed and low right now. I have pudendal neuralgia and colorectal issues and am receiving really good care from the hospital in London which is great but I live in Cornwall, the furthest place in the country from the hospital. Earlier this year I had to go there once a week for 8 weeks, now its every week for 4 weeks plus countless appts in between. It costs me £400 a time and I can only work part time, I get a small amount of benefit but this is breaking me financially.
    The hope is by the end of this year I'll have a stim fitted to better manage the pain and from the trial of it I had it did reduce it by half... I feel guilty complaining when there are so many without proper treatment of this condition. I've so far got into £3500 of debt from hotel (cheapest I can find) and travel and am getting so stressed out from worrying about money its making my pain worse and Im barely sleeping. I set up a crowdfunder but took it down quickly as it felt wrong asking people for money. When I mentioned the idea to my parents and partner they all said it was a very bad idea yet offer little in the way of solutions. They say when the hospital trips slow down I can put the money im not spending into paying off the credit card, but I'm living hand to mouth as it is... just so frustrated by all of this

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