Living with Sudden Onset OCD (PANS/PANDAS)
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- Опубликовано: 28 ноя 2022
- David was a happy-go-lucky kid until he woke up one day "feeling possessed". He was suddenly convinced that if he did simple tasks, like use a fork, his loved ones would be harmed. His parents eventually learned that David was experiencing brain inflammation due to a condition known as PANS/PANDAS. David and his family want others to know that PANS/PANDAS is real and it needs more attention.
Connect with David at / davidslife99
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My dad is a physician in Dominican Republic and, at least up to the point I left the island, he was one of the few doctors in the whole country that was accepting of this condition and willing to treat patients. I’m sending him this video; he will love it!
I've had PANDAS for over a decade. My heart stopped when I saw this in my recommended. The only times I've ever felt so understood was when I saw a PANDAS specialist after suffering in silence for years. I feel so conflicted. I understand. It's like being trapped behind a thick glass pane that won't crack no matter how hard you throw yourself against it. A perceiver in your own body, trying to break out of a body of broken bones and hopes. Like your drowning in dark tar, struggling so hard against the thoughts and distortion, knowing it's not real, but it IS.
I really liked David’s parents, they seem like amazing people, and they’re very helpful and supportive.
This child is so lucky to have the parents that he has. They are educated and affluent. Imagine how many children with less favorable environments will never even be diagnosed.
I am sobbing. PANS robbed my son of his life. He’s currently institutionalized due to some resulting behavior. Thank you @specialbooksforspecialkids for bringing awareness to this terrible disease 🙏🙏🙏
I've had PANDAS since I was 8, I'm 22 now, I think its so amazing that you guys are bringing awareness to this awful disease. And props for interviewing someone older, because theres this misconception that PANDAS ends after puberty starts which isn't true for a lot of us.
I was a PANDAS kid and am still affected by it as an adult, and I’ve been waiting for something like this for so long. I always see things about it from the parent’s perspective, but never from the PANDAS/PANS sufferer themselves. Thank you so much to everyone involved in this video!!!
What he said about how “I know it’s a flare up but I just can’t push past it” is SO relatable. It is SO INCREDIBLY FRUSTRATING to know that something is just your brain acting weird and that it’s just how you are and all of that and YET you STILL cannot move past it. For me it makes things more debilitating. I think that really helped me feel validated even though I don’t have PANS it’s definitely relatable to other mental conditions
I was the first child in fl to be diagnosed with PANDAS over 20 years ago. I was only 7 at the time, but can still vividly remember how the initial onset felt and how rough the road was after. My neurologist was so confused and didnt believe i would ever get better, until he diagnosed me. I spent 2 weeks in the hospital losing my ability to talk, walk, eat, and use the restroom. I remember wanting to die because I couldn't take the anguish anymore, the feeling it gives in your brain is indescribable. I developed extreme tourettes that lasted for years. I think the most frustrating thing about this disease is that we don't really have any data on how it affects adults. They told my parents it was a pediatric disease and I would grow out of it, but they didn't really know. And today as an adult I still have flare ups, I have been diagnosed with other neurological and mental illnesses but I honestly don't know how much of it is real and how much of it is simply PANDAS following me into adulthood. There are so many times where I forget I have it, and best myself up for my symptoms skyrocketing out of nowhere after I had made so much progress. This interview was so comforting to me, and has inspired me to give myself grace.
This is a very important action you’re taking David, creating awareness of this condition. I myself had never heard of it until this video, and I want to thank you for bringing it to my attention. I hope those in the medical field invest the time and effort toward understanding this condition and hopefully be able to improve it somehow for those who have to deal with it.
Been a SBSK follower for years but I don't always comment. David is such a brave man for telling the world about this. I never heard of PANDAS before and it was eye-opening. He has beautiful parents as well. Thank you David and his parents for sharing. I wish you all the best.
Hi David and family, I just watched you tell your story and I wanted to share some things that have helped me in my own battle with PANS.
My son is autistic and non verbal. ( David has just given him a voice 🙏🏻). This illness is so vicious we could clearly see it wasn’t autism. It’s like watching your son get tortured by an invisible daemon. My son has had this since he was 10. He will be 18 in December.
He seems like such a sweet guy, honest and genuine. I'm glad he reached out so people can learn more about this. Thank you David for teaching us. Hopefully this can make a chain reaction for more people to come out and talk about this, and maybe someday we can work on getting a cure or something to really help with this.
This is huge! As someone with PANDAS I’m so over the moon excited that awareness is finally spreading about what this illness is. It’s so very misunderstood.
Oh jeez. I have severe OCD.. and these things are very real.. like the thought and feelings are there 24/7, and the posessed feeling. You really feel like that your brain is on FIRE. Those clips in the video is soo accurate and are too triggering for me.. I can’t even watch them
"The brain is the only organ that named itself." I got a kick out of that... It probably messed up and meant to call itself "Brian" ;) I feel for you David, and I'm so glad you've found something that has helped, and that you are clearly surrounded by so much love. It is horrible how the brain can become its own worst enemy... I wish that never happened to anyone.
David is showing how brave he is, sharing his story & raising awareness. A true warrior 👍 much love and respect 🥰
David's relationship with his parents is beautiful 🥰
The best SBSK interview in my opinion. Yes they all are great but there's just so much in this one. They describe PANS/PANDAS very well and it's something I did want to understand. I've heard the words but had no idea it was a brain illness. Having compassion for ppl with PANS/PANDAS is paramount along with a persistent drive to get proper treatment. Thank you big time to this family for educating us!!