Arteriovenous Malformation

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    Community Voices

    An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence

    Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.

    I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.

    On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.

    The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.

    Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.

    Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.

    I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.

    I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.

    I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.

    The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!

    I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.

    Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.

    My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.

    I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.

    The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver

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    Community Voices

    Reflections on Losing My Hair Due to Rare Disease Treatment

    “Hair is everything.” I binged the entire show Fleabag on Amazon Prime in two days and that quote is what stuck out to me in the entire series. I’ve been trying to write about hair for a while now, but I couldn’t develop the words; Fleabag nailed it on the first try. Losing your hair physically changes your appearance, and if you’ve watched as many America’s Next Top Model make over episodes as I have, you know people are emotionally attached to their hair. There’s always at least one person who is sobbing in the corner threatening to quit the show. I always thought they were so dramatic. It’s hair. It grows back! I would never act the way they were if Tyra gave me a chance. But then I started losing my hair, and suddenly all those emotions made sense. I knew I was losing my hair three months into chemotherapy for my rare disease. I was diagnosed with arteriovenous malformations (AVMs), a rare and incurable condition where my arteries and veins don’t connect properly. There’s no cure for this, so it’s either invasive surgeries that may not work or experimental chemotherapy drugs that still might not work. I wasn’t sure if I was losing my hair at first because my hair is naturally thin in some areas as a result of my disease. The tricky thing about it all is that it doesn’t just happen overnight either. The before and after is significant, but the day to day isn’t. Just a little bit here and there. Maybe a little more in the shower drain than usual, but I couldn’t spot the difference on my head. I cut my hair shorter to try and combat what could look like hair thinning just to play it safe. I easily played it off as a fun trendy new spring look for myself. Sure, my hairbrush had a little more than normal for me. Sure, if I ran my fingers through my hair, strands would just keep coming. I adapted to it though. I mean, I couldn’t definitively prove that I was losing my hair. Then I looked at photos and saw where there were gaps. I started removing hair balls the size of small animals from the shower drain. By the time I really accepted it, three quarters of the hair on my head was already gone. I could no longer wear it down. It was patchy, the ends were dried out, and it just hung there, so I wore my hair up every day. I wore headbands to make it seem like a fashion choice I just decided to casually try out. Two months later, I accepted my fate and chopped it all off. I guess it’s a side effect of living. I’m losing my hair, but at least I’m alive. Still, I didn’t consent to losing my hair. Yes, I knew it was a possibility, but maybe I’m still in that teenager mentality of “oh, it won’t happen to me.” I also didn’t think I’d have so many feelings about it because I knew it might happen. I was mentally prepared. It wasn’t sprung on me the day of like it is to those models. I had agreed to the terms. I knew what I was signing myself up for when I said I would start chemotherapy and saw the two page long list of possible side effects. So why was I so upset about something I knew would most likely happen? I’ve narrowed it down to fear. Hair is important. Why else would there be so many organizations set up to give free wigs to cancer patients. Hair matters. It represents your identity, your style. For me it’s a coping mechanism, a way to hide my AVMs. Losing it, is losing that shield. The most vulnerable part of me, laid bare for all to see. It’s being put into a fight, with the opponent already knowing your weaknesses. Hair shouldn’t matter because yeah, it’ll grow back eventually. But it does matter. It means I have to learn a new way of styling it. I have to adapt to this new identity. I wake up to find out if this day will be good or bad all because I might’ve slept on it wrong. I may like my new Tyra Banks approved look, but that doesn’t mean I wanted to go through the process. What is our obsession with hair anyway, why does it mean so much, how do we as a society move past this and see we are more than our hair? Putting it simply, losing your hair stinks. It completely changes you. As if being on chemo isn’t something people already struggle to relate to, now it’s losing hair. Even with feeling confidence in my new pixie cut, I notice myself always answering one question differently… Why did you decide to cut your hair? Clearly, I know the answer. I was losing more hair than I was growing new. It looked horrible and unhealthy so I needed to chop it off. Depending on who is asking though I have two answers: “the medicine I’m on caused it to start thinning, so I cut it all off,” or “I realized I was wearing it up all the time and figured why not might as well cut it all off.” The first one is honest, but it annoys me because for some reason I still can’t say the words chemotherapy to people. The second one may have been a contributing factor, but was not the reason I decided to cut it. If I could’ve still gotten away with wearing my hair down I would not have chopped it. I don’t know if it’s the stigma of losing your hair, if I feel it makes me weak, if I’m afraid of the pity I’ll receive or maybe I’ll make someone uncomfortable, yet for some reason I can’t be 100 percent honest about it. I don’t regret chopping my hair off, but I do still sometimes get insecure about it. My disease is all out for the world to see and most days, that doesn’t matter. Most days, I forget about them and continue to live my life. Most days, I am happy. But some days, it takes all my energy to put on an aura of confidence as soon as I step outside my apartment. It takes all my focus to put on this persona and act like I am not bothered by the fact that I am not the same.

    Community Voices

    A Journey Into Peer Support!

    A Journey into Peer Support! by Frankie Adao, CRSP

    When we talk about recovery, whether it be mental health, physical health or substance abuse recovery, we often speak about it all in regards to a clinical or text book model. However, there has been a movement in the last 10 years that most times, does not get the spotlight or credit for the power in recovery. Peer Support is becoming a rising career for those of us who have the life experience in wellness and recovery.

    I am what is known in the field of Mental/Behavioral Health and addiction services as a Certified Recovery Support Practitioner (CRSP). It is a fancy way of saying a Peer Support Specialist. Many agencies across the nation have employed individuals, like myself, to fill the roles in working with individuals who are being provided services.

    My journey through recovery that has led me to the most valuable and purposeful work I have ever done started approximately almost 6 years ago. It was not an easy road! The day is very clear in my mind. February 2, 2015. You see I had been dealing with a life time of undiagnosed mental health issues. Looking back now in a place of wellness, those issues started early on in my life as a very young boy. Red flags that my parents and family did not connect the dots such as extreme defiant behaviors to adults, tantrums until I turned blue in the face and harm to animals. Those experiences are somewhat foggy, however, my family now sees how these flags were existent throughout my childhood.

    I have an older sister who vividly remembers two incidents with harming animals, but at the time, looked at it was “Frankie is just so bad!” At about 3 or 4 years of age, my parents heard the family cat screaming. When they followed the sounds, they found me behind the couch with the cat and fur in my mouth. I was biting the cat. Then in about the 5th grade, we were going on winter recess for the holidays. My teacher had asked the class who would like to take the classes pet home for the break so it could be cared for. I immediately raised my hand. She advised me to take a letter home to my parents granting their permission to take the mouse home. I took the note home and forged my mother’s name. This was way before emails even were in existence.

    The mouse was given to me on the last day of class before break. I remember walking to my mom’s job, saying “Look what I got!!!” My mother freaked out and said “absolutely not! Take it back!” What I do remember was being ENRAGED! I went home with the mouse and what I do remember is going in our snowy back yard. I remember it being snowy as we had mounds of shoveled snow around the yard and being so angry that the snowflakes that fell on my face, melted instantly. That is how angry I felt. I remember seeing RED! Then I remember about 15 minutes later my sister running out in the back yard and screaming “WHAT DID YOU DO! WHAT DID YOU DO!” She had heard screeches! I had buried the mouse into one of the snowy drifts. When my parents got home and my sister told them, they were shocked. They had to make up an excuse as to what happened to the pet once school returned back in session. This is actually even hard to write or fathom because now I am such an animal lover and advocate for animal rights.

    At age ten, I was diagnosed with a brain arteriovenous malformation (AVM) and a seizure disorder. As if I didn’t already feel different among kids my age, this made the distance even further. I would isolate, have depressive states, and often thoughts of suicide. These issues manifested into my early adult years leading to explosive reactions towards people in my life and substance abuse issues. I know now that the substance abuse was an effort to self-medicate these issues as I was unaware of what was going on, but would feel so guilty I needed to numb the pain.

    My undiagnosed mental health issues where now impacting holding jobs, keeping healthy and supportive relationship, my family and friends. It would get so bad that I would get severe panic attacks that would lead me to having unconscious “fight or flight” responses! Most times than not, it would result in flight. I would get some really good job opportunities, start the job, experience a debilitating anxiety attack, and just get up and leave! I would get this voice that would tell me “You are stupid! You are unqualified! You will fail! You are useless!” My only focus was to get back home to where I felt safe. This pattern would snowball and continue from ages 22 until about age 39! I remember the feeling of not wanting to leave the house, which led to feelings of worthlessness and severe depression. So bad that it would cause intense thoughts of suicide. I would continue this cycle through the birth of my son, through the passing of my grandmother who was a huge support for me, through more jobs, and through destroying relationship. I would try at several points to take my life. There was debilitating depression, guilt and shame! I felt worthless and without direction.

    On the morning of February 3rd of 2015, I awoke that morning at about 7 am and pursued an unjust argument with my wife. Just as she was getting ready to go to work and getting my 12 year old ready for school. Enraged for no real reason, I locked myself into my bathroom and proceeded to ingest 80 pills of Tegritol. My wife knew something was going on and her and my son were screaming on the other side of the door. Pleading for me to not do anything drastic. It was at that point that my wife called the police. What they did not know was that the medication I took was time released medication. So when law enforcement arrived, I was not experiencing overdose. I had a replica bee bee gun in my room so when I heard the radios of the police in my home, I grabbed the bee bee gun and opened the door! I didn’t know at the time, but they had been officers that knew me and my family very well. My wife also had told them the bee bee gun was in the room, however they still approached me with hands on their guns. One of the familiar faces said “Frankie, you either come with us willfully or I will have to cuff you and take you to the hospital. We have an ambulance downstairs and you need to get there ASAP!”

    I went on my own accord, but it was not without saying very nasty and hurtful things to my wife, my son, the officers and my neighbors. I was taken to the nearest ER and by the time we arrived, I had started to fall into overdose. I had to drink tons of charcoal and had to have my stomach pumped. Things went black! The next thing I remember was waking up in a hospital room. As my eyes began to focus, I can see an image of a person and as they became clear, it was a nurse sitting by my door way. She told me that I had been taken to medical and that due to my suicide attempt, I would need to have a “one to one” monitor in the room at all times to be sure there were no other self-harm attempts. I was instantly struck with intense pain in my face/head. The nurse said “Honey, I am going to give you a mirror. I want you to prepare yourself for what you look like. You tried to get up in the ER yesterday morning and fell face first on the ER floor. You cracked your orbital skull and are very swollen and black and blue.” She handed me the mirror and when I looked at myself I began to cry. I was embarrassed and feeling guilt. I would remain in a medical unit for approximately 5 days. During this time I was assessed daily for liver failure and even told I may be put on a liver transplant list. I was also assessed by several psychiatrists. I refused to see my wife and son. I would only permit my sister and my mother come visit.

    On the 5th day I was cleared medically. I thought I was going home. So I thought! A psychiatrist came in and announced that I was to either voluntarily admit myself to their inpatient psychiatric unit or I would be involuntarily admitted for a higher level of treatment. I was TERRIFIED! There was no more running from the issues. They were right there in front of me. So tangible I could almost touch them. My mom was there and I remember even asking her to make a great escape with me. She knew that I had to get help finally. I agreed to go voluntary. That night I was transferred to the unit. Unsure of what to expect, but had images of what I saw on TV and movies and I was scared! I spent 2 weeks on the unit. My daily routine became: waking up at 5 am to shower, some quite time to journal and write letters to the family, eat breakfast, meds, groups, lunch, meds, more groups, some Rec time, more groups, dinner, some TV time, a snack, meds and lights out by 10pm. This became the new structure for my life. Probably the most structure I had in about 25 years. IT WAS JUST WHAT I NEEDED!

    During the moments of quite times and lying awake in bed, I had time to reflect on what had led me to this point. I had time to write to those the hurt that I caused them. It allowed me to gain perspective and gain insight into my life. There was a peace finally that I had not experienced in as long as I could remember! I was diagnosed with Bipolar II, Major Depressive Disorder, Generalized Anxiety Disorder and Borderline Personality Disorder. While that may be weighty for some to get diagnosed, I felt relief. I felt that finally, there were answers to what was causing the behaviors and states that I had lived with for most of my life. I was gaining tools on managing life and these knew diagnoses. There was an adjustment to new medication treatments as well as the light bulb moments sitting in CBT & DBT groups. Meeting and talking to the individuals I was spending my time there with. Hearing their experiences, their paths and their journeys. Then discharge came 2 weeks later. I have to say part of me did not want to go! The structure became so comforting for me that I was terrified of the unstructured world! How would I manage all of this? I was clean and sober. I was mentally feeling the best I have in a very long time. I would I sustain all of this?

    Upon my discharge I was linked to an outpatient psychiatrist as well as a case worker from Integrated Case Management Services (ICMS) through Catholic Charities. My case worker Patty met me at my home and held my hand through walking into the door for the first time since that morning, which felt like years rather than days. Patty worked with a team of case managers that would be part of my recovery team. Sharon, Lakisha, Alison & Jackie! My dream team of angels. Jackie, my primary case worker, would come to see me several times per week. We would work on wellness and recovery goals. We would talk about life and what staying well meant for me. It was an exploration. Questions that I never thought of. I told Jackie that employment has been a challenge for me and was a trigger. I wanted to contribute to my family, but I wanted to feel valued and purpose!

    I truly invested this time of healing, which my wife 200% supported the time I needed to take to heal as well as her and my son. I learned about my diagnoses, my medication treatments, dove into clinical therapeutic treatment and continued with ICMS. At one of my visits with Jackie, about 6-8 months post discharge from the hospital, it was time to start talking about employment. I had no idea what I wanted to do. Jackie explored with me planning to do something I felt happy to get up every day to do. She mentioned an opportunity that she just heard of called Consumer Connections through the mental health Association of New Jersey (MHANJ). They were looking for individuals with mental health and substance abuse recovery. I had been vested into my treatments and actively going to 12 step groups and Jackie thought this may be the thing that would fill that void. With nothing to lose, I applied for a training opportunity to go through a 6 month training course offered through MHANJ where they were training and preparing individuals to work in peer support. They offered me a space in their class. It would be the most amazing education I would get! I made lifelong friendships and would graduate feeling I had the tools and empowerment to work in the field with individuals to help explore their own wellness and recovery. I learned that recovery is not linear. There will be peaks and valleys. That recovery is individual. I would learn about things like motivational interviewing, biological perspectives of mental health, various disorders and treatment options, psychopharmacology and working in community settings. It was a proud moment for me and my family the day of my graduation.

    Upon graduating from Consumer Connections, I took the course one step further by applying for my Certified Recovery Support Practitioner licensure through the Certification Board. The addiction Professionals Certification Board of New Jersey’s primary function is the education, certification and testing of addiction and peer specific mental health professionals in the State of New Jersey as well as internationally in partnership with the IC&RC. I completed field work hours volunteering for my ICMS agency and at the end of my hours, was offered a job working for Catholic Charities Program of Assertive Community Treatment (P.A.C.T) as a Peer Support Specialist. At P.A.C.T my recovery experiences and a new skill set as a CRSP, I would invest in a career into providing treatment working with participants of services from all spectrums of mental/behavioral health. Even, working with the very same “Dream Team” I had as an ICMS clients. Sharon, Lakisha, Lilly, and Alison now where my team mates! Full circle!

    They have pushed me to return to college, which I graduated in December 2019 with my Bachelors in Psychology. Now I am in graduate school for my Masters in Social work at Louisiana State University. The goal is to obtain my Licensed Clinical Social Worker license so I can open up my own private therapy practice. I have worked in Supportive Housing, treatment and case management services for some of the top agencies in the nation! My wife and son have been supportive and often tell me how proud they are of my journey and the passion I have for what I do. I wake up every morning feeling value and pride in working with the individuals who allow me to be part of their own wellness and recovery. It is not about my experiences, it is about connecting on similar life experiences and empathizing with them in their own experiences. It is about providing hope, advocacy, education, resources and self-determination. That there is life beyond a diagnosis. That your past does not determine your present or future.

    Generally, I can open conversations on a peer level that the clinical staff members I work with cannot. People want to be heard. They want to know that someone understands aspects of their challenges on a life level. That they are not just reasons for dissecting their diagnosis. It is a magical connection that happens between two peers in the journey of wellness and recovery. A relationship that is often never heard of in treatment and case management services. The power of the Peer Movement is growing by leaps and bounds as states are seeing evidenced based statistics surrounding the implementation of trained and certified peers! We often talk and hear about experiences in wellness and recovery, but we rarely hear from what people are doing with those experiences to help the next person. Paying it forward! Listen, I did not reinvent the wheel at all into success in recovery. I have my own good days and bad days. I learn how to manage those bad days and utilize the same skill sets that those I work with use to manage their recovery. We are equals! We work together. We are on the life journey together! It is the power that the peer connection brings to the work and the human connection in wellness and recovery!

    10 Things I Learned While Living With Arteriovenous Malformation

    I was diagnosed with a disease called arteriovenous malformations (AVMs) at the age of 4. I’ve had this disease since birth and went misdiagnosed for those first 4 years. Basically, AVMs are a tangle of blood vessels where my arteries and veins don’t connect properly. My high-pressure arteries go straight into my low-pressure veins with no capillary bed to mitigate this flow. This condition is rare, inoperable, and there is no cure. I’ve learned quite a few life lessons living with this diagnosis for 20 years that I wouldn’t have if not for this disease. I’ve shared these with others within the chronic illness community and some seem to span across illness. So I hope this list of just a few life lessons helps you see into my world and the world of those living with chronic illness. 1. I am aware and scared of my surroundings at all times. Due to my AVMs, I have an increased risk for spontaneous bleeding and I’m prone to bleeding more than the average person if I’m hit on my right side, where my AVMs are located. There is always a chance that I may get hit in the head and I will not be able to control the bleeding, especially when I’m near other people. It could be an elbow, a ball, or anything with enough force. Lately, it’s been that if I itch my head too much I’ll scratch the skin and start bleeding. 2. I can try my hardest, but sometimes the odds just aren’t in my favor. Growing up, I tried everything. I did volleyball, basketball, soccer, tennis, swimming, and cheerleading but slowly each thing was crossed off the list due to the high risk of being injured. The extra blood flow my AVMs require also puts me at risk for an enlarged heart and going into congestive heart failure. This means I need to exercise to keep my heart healthy, but I can’t sustain an increased heart rate for too long or I start to have pain in my AVMs. I kept looking for an activity I could participate in without putting my health at risk. Thankfully, I found golf and yoga. They’re both considered non-contact sports and now I’m a certified yoga teacher! 3. Plan, plan and plan. Whether I am finding a new home or going on a quick vacation, everything must be planned. How long would it take the ambulance to get to me? Where is the nearest hospital? Does that hospital have the type of specialist I need? I can’t forget to grab enough medication and make sure I have a medic alert bracelet in case I am surrounded by people who don’t know I have this disease. Everything needs to be planned out for the worst-case scenario. 4. To quote John Green, “Pain demands to be felt.” Pain is real and quite consistent. For me, it rears its head at any given opportunity. Too many times have I gone to a concert and while my friends are carefree and having fun, I’ve been trying to block the pounding head and neck ache until I get home. Sometimes the pain is just that I’ve been standing too long and my body needs a break. 5. Having surgery doesn’t mean I can’t have fun. Not everything is negative when living with a disease. My disease has allowed me to travel, for surgery, to five different states. I get to experience these places before my surgery and I can be pushed around in a wheelchair afterward to keep experiencing it. I have met so many people that I am honored to be able to call friends, and some are even considered family. These trips created memories I will never forget. I’ve been able to prank my doctors, dance on the operating table to One Direction, get tips on the best place to eat in town, and celebrate holidays in the hospital with the nurses. 6. Insecurity is inevitable. My disease causes redness all throughout the right side of my head, neck, and part of my face. My right cheek juts out more than usual and I’m missing the top half of my right ear. No matter what age I am, no matter what makeup I wear, no matter who I am around, I will get insecure because of that. This insecurity comes from individuals staring at me from a distance, people gossiping about why I look the way I do, and even strangers coming up to ask questions like “what’s wrong with you” (and yes, that is the phrasing I have received from full-grown adults). I go through periods of body acceptance and not caring what others think, but whenever I meet someone new, that insecurity creeps right back in, and I feel like I’m back in elementary school afraid to put my hair in a ponytail. 7. Telling people I have a disease can be the most difficult thing I have to do. Telling people is always the thing I struggle with the most. I avoid telling people if I know I will never see them again. What’s the point of going into one of the hardest parts of my life to someone I’ll never see again? I usually wait a few weeks before telling any new friends about my disease because I don’t want people to only think of me as this sick person. But, when do I tell them without it feeling like I’m hiding a part of myself? My disease has made me who I am and I’ve learned so much from these experiences and made amazing friends within the disabled community. 8. Friends are everything. My friends are the ones who understand. If it’s one friend or five, knowing I have someone who will listen without bias or even keep me company when I’m not ready to talk about something has helped me make it through this life. They know my limits and don’t ask questions when I might have to stop or when I can’t do something. They act as if I am no different than them while knowing that I am. They remind me I’m not alone during all the highs and lows. 9. I am not alone, but I am. My support system is wide and far and I will never be able to express my gratitude for that. Yet, no one really knows what I’m going through. I know other people with this disease, but each person has a unique set of circumstances. We will never be able to fully understand one another. I know I can talk to anyone, but I have no one who can truly relate to my feelings and situations. This can be hard to realize, but becoming more active in the disabled community has helped with this feeling so much. Seeing other people’s stories and how similar we all are has helped me accept where I am in life. 10. There is a lack of awareness about rare diseases. Having a rare disease is just that. Rare. Many people will not know what I have. Most will never have heard of it. I have to be the one to educate them. When more people know and understand there are more opportunities, more fundraisers, more charities, and more funding for research and treatments. That is why I started my charity, Kelleigh’s Cause — to find others like me and let them know there is someone else out there. There is someone fundraising for research so you do not have to go through multiple surgeries a year. There is someone educating healthcare professionals. Spreading awareness is key to living my life. Yes, it can get exhausting having to describe my situation but I’ve learned when it’s necessary and when I can say I’m just a person living her life and I don’t need to explain myself. I was forced to become an ambassador for my disease when I was born, but I also have the power to be a role model and educator.

    Community Voices

    I Went From Fighting To Live to Wanting To Die #Stroke #ArteriovenousMalformation

    It’s hard to remember my brain bleed, because of the nature of it all I obviously felt out of it for a lot of the time, slipping in and out of consciousness. It’s also hard to remember because I think my mind doesn’t want to remember and relive how traumatizing the experience was.

    I do remember feeling blessed. I felt beyond grateful and lucky to be alive. I had A LOT of fight in me, and was willing to do whatever it took to fix the brain stem malformation I had. I went to brain scan after brain scan to radiation treatments to more brain scans with one goal in mind: To keep living.

    I was happy. So stupidly happy, and I felt invincible. But it started with . No big deal, I’ve always been anxious. It turned into #Depression. Then one day, I broke down. Hello . It took over FOUR years before the mental health effects started to settle in. After I started struggling with , I became suicidal. I couldn’t understand it. “I just want to die” creeped into my mind, then started to take over all of my other feelings. It got louder. And then I got help.

    When the days are hard, I still want to die. I convince myself that things will never really get better and my family would be better off without me causing them so much pain. But I try to remind myself of the time I was so determined to live, and found it so easy to find reasons to keep fighting. Sometimes that fighter seems so distant from who I am now. I’m fighting to find her and have more days of wanting to live vs. wanting to die.

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    Community Voices

    Who has #encephalomalacia? But it's like a word that's not used except on Wikipedia and medical sites

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    New Member #newbie

    I just joined The Mighty today because I need a place to vent about my frustrations from living with chronic illness in my 20s. I am partially undiagnosed (some things have been diagnosed but my biggest issue is still a mystery for now) and I am sick and tired of dealing with small town doctors telling me I am too young to have feel this way. Test after test and they STILL can't get to the root of my chronic pain... so apparently it's "all in my head" and I am "faking it for attention." I will be seeing a new doctor soon and hopefully she will listen to what I have to say and take me seriously, fingers crossed and prayers going up! #NewMember #ChronicPain #IrritableBowelSyndromeIBS #Migraine #ArteriovenousMalformation #SpinaBifida

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    Country Singer Drake White Reveals Rare Disease AVM Diagnosis

    Country singer Drake White revealed he was diagnosed with a rare neurological condition arteriovenous malformation after he collapsed onstage during a recent concert. Best known for songs like “Livin’ the Dream,” White told People in a new interview on Wednesday he was diagnosed with an arteriovenous malformation (AVM) in January. The rare neurological condition causes a mass of tangled blood vessels in the vascular system, which can cause bleeding in the brain and other symptoms such as seizures, loss of coordination, dizziness, confusion, hallucinations and ruptures. In White’s case, his doctors think he likely had the condition since birth. “It was basically stealing blood from my brain,” White said. “The neurologist told me that I should be thankful it was caught in time, because it could have caused a stroke.” White initially started experiencing symptoms in late 2018 after a headache wouldn’t go away and he started seeing spots on his vision. Then one side of his body went numb and he went to the emergency room when his symptoms didn’t improve. He had a series of tests, including an MRI. He said not having an answer for his scary symptoms was one of the most difficult parts of the process. “The true nightmare is having something wrong with you and not knowing what it is. Nobody could tell me what was wrong,” White said. “The next thing I know, there is a guy walking in with the word ‘neurologist’ on his nameplate. He told me, ‘You have a mass in the back of your head. It’s treatable, but it’s going to take a while.’” AVM is treatable using a series of embolization procedures to cut off blood flow to improper areas of the brain. In the last eight months, White said he’s had four procedures, which are spaced out to allow his brain time to adjust to changes in the amount of blood flow. White added his doctor thinks they’ve “knocked out 75% of the mass” and hopes it will be completely gone by the end of the year. Four days after one more recent embolization, White was performing an Aug. 16 concert in Virginia when he started to stumble and collapsed onstage. After another procedure, White revealed he was already back up on stage two days after his procedure. While he’s trying to be extra careful, he said continuing to maintain his regular life and work as much as possible has been helpful to his recovery. “There was a show in April that I played 48 hours after surgery and that was very therapeutic to me,” White told People. “Emotionally it made me realize that I could still do this. Maybe I wasn’t jumping around like I usually do, but I was doing it. … Not to be all sunshine and rainbows, but all of this made me appreciate all that I have and all that is to come.”

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