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Chronic Advocate
เข้าร่วมเมื่อ 10 พ.ย. 2012
I am a 21 year old disability advocate who uses this channel to talk about PANDAS/PANS, Lyme, Tourette's, Autism, and Chronic illness. I hope you find something here that helps!
Disclaimer: I am not a medical professional, the information presented on this Channel is not to be used as a substitute for a diagnosis or treatment from a qualified medical professional. This is to be used for educational purposes only. For medical advice, please consult a doctor / qualified medical practitioner. I do not claim to cure, mitigate or treat any condition. No content on this website should be taken as medical advice.
Useful links :
Ticcers Unite Website: www.ticcersunite.com
PANS PANDAS UK:
www.panspandasuk.org/
Disclaimer: I am not a medical professional, the information presented on this Channel is not to be used as a substitute for a diagnosis or treatment from a qualified medical professional. This is to be used for educational purposes only. For medical advice, please consult a doctor / qualified medical practitioner. I do not claim to cure, mitigate or treat any condition. No content on this website should be taken as medical advice.
Useful links :
Ticcers Unite Website: www.ticcersunite.com
PANS PANDAS UK:
www.panspandasuk.org/
Are Private Clinics "Cashing In" On False Lyme Diagnoses? (read caption)
I share my perspective on this topic as someone who got overseas testing for Lyme and has been to private Lyme clinics. Studies are underway to try and create a more accurate mainstream Lyme test, as the one used by the NHS and by hospitals in America only has a 50% accuracy rate.
The NHS doesn;t diagnose of treat chronic Lyme despite 700 peer-reviewed studies and articles showing that Lyme and co-infections can persist despite antibiotics. ILADS document showing references to over 700 articles: www.ilads.org/.../uploads/2018/07/CLDList-ILADS.pdf
The NHS (and doctors in mainstream American Hospitals following outdated IDSA guidelines) as to deflect responsibility and save money by saying we all have ME/CFS as they do not want to be sued for not treating people.
The NHS doesn;t diagnose of treat chronic Lyme despite 700 peer-reviewed studies and articles showing that Lyme and co-infections can persist despite antibiotics. ILADS document showing references to over 700 articles: www.ilads.org/.../uploads/2018/07/CLDList-ILADS.pdf
The NHS (and doctors in mainstream American Hospitals following outdated IDSA guidelines) as to deflect responsibility and save money by saying we all have ME/CFS as they do not want to be sued for not treating people.
มุมมอง: 162
วีดีโอ
OCD Not Responding To ERP/CBT? Factors To Consider
มุมมอง 1673 หลายเดือนก่อน
CBT/ERP is the gold standard therapy for OCD, working well for around 80% of people. However, not everyone is lucky enough to respond to this. Tourettic OCD, PANDAS/PANS, Autism, and Delusions may cause a person to have to an atypical OCD experience, and therefore need atypical treatment. It is vital that practitioners distinguish between intrusive thoughts and mental tics as they ARE different...
PANS Symptoms Not Improving Long-term? Factors To Consider
มุมมอง 2363 หลายเดือนก่อน
PANS/PANDAS is usually treated with antibiotics, IVIG, anti-inflammatories, and in severe cases - Plasmapheresis. What do you do though if these interventions don't bring long term relief? This video explains some factors to consider if these treatments aren't working so well long-term. Disclaimer: I am NOT a medical professional, this is NOT to be used as a substitute for diagnosis or treatmen...
POTS Awareness Merch Unboxing - Health Harbors
มุมมอง 1714 หลายเดือนก่อน
The shop: www.etsy.com/shop/healthharbors/?etsrc=sdt POTsie Princess Bag: www.etsy.com/uk/listing/1659842428/potsie-princess-tote-bag-pots-syndrome?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=potsie princess&ref=sc_gallery-1-3&plkey=75fd5e7269305e9b00a3b4e38458ebe1398ec3c5:1659842428
It Isn't Always Just A "Different Way Of Being"... Neurodiversity Terminology Talk
มุมมอง 3135 หลายเดือนก่อน
I am different, that's obvious, however I do not agree with the erasure of the term "condition". My Tourette's is certainly a condition, that sometimes requires medical management to keep me safe. I don't think it is natural to involuntarily injure yourself and I don't think that can be celebrated either. Of course though, there are aspects of TS and other neurodivergent conditions that can be ...
The Medical System Wasn't Designed For Chronically Ill People
มุมมอง 2045 หลายเดือนก่อน
In this video I talk about how the conventional medical system ignores root causes, neglects chronically ill people, gaslights many people, doesn't look for systemic issues enough, and why some people choose functional medicine. I am a 21 year old with POTS, PANS, Tourette's and likely Lyme. I've seen many different doctors throughout my life and these are issues I have noticed within the medic...
The Negative Aspects Of My Autism Diagnosis (With PANS & Tourette’s)
มุมมอง 2516 หลายเดือนก่อน
An Autism diagnosis is a blessing for a lot of people as it gives them the answers they need, gives them the ability to request accommodations, and gives them the ability to understand themselves. However, the stigma and negative attitudes around Autism can lead to some negatives - such as medical gaslighting, medical neglect, and assumptions being made about an individual based on their diagno...
My Experience In Mainstream School With Tourette’s, Autism, & OCD
มุมมอง 4057 หลายเดือนก่อน
In this video I talk about my time between year 6 - year 11 in mainstream school with Tourette Syndrome, Autism, and OCD. Useful Links: My TEDx Talk: th-cam.com/video/9am9UvZksRw/w-d-xo.html My Buymeacoffee page: www.buymeacoffee.com/ticcersunite Ticcers Unite Website: www.ticcersunite.com/ The Autism Workbook For Teenagers: www.amazon.co.uk/Autism-Workbook-Teenagers-Improving-self-esteem/dp/B0...
Sensory Office Room Tour | How It Accommodates My Neurodivergent Needs
มุมมอง 2678 หลายเดือนก่อน
Sensory Office Room Tour | How It Accommodates My Neurodivergent Needs
Why You Should Listen To Neurodivergent People Over The Self-Proclaimed "Specialist" Doctors
มุมมอง 3149 หลายเดือนก่อน
Why You Should Listen To Neurodivergent People Over The Self-Proclaimed "Specialist" Doctors
Why Behavioral Modification "Therapies" Didn't Help | Rages & Defiance in Tourette’s & PANS
มุมมอง 2119 หลายเดือนก่อน
Why Behavioral Modification "Therapies" Didn't Help | Rages & Defiance in Tourette’s & PANS
Purple Toes?! What Is POTS & Why Is It So Often Misdiagnosed As Anxiety?
มุมมอง 45411 หลายเดือนก่อน
Purple Toes?! What Is POTS & Why Is It So Often Misdiagnosed As Anxiety?
What You NEED TO KNOW About Lyme Disease & Co
มุมมอง 455ปีที่แล้ว
What You NEED TO KNOW About Lyme Disease & Co
Tourette's VS PANDAS/PANS | The Differences
มุมมอง 1.1Kปีที่แล้ว
Tourette's VS PANDAS/PANS | The Differences
Reacting To My First TEDx Application From Age 16 (Cringe)
มุมมอง 197ปีที่แล้ว
Reacting To My First TEDx Application From Age 16 (Cringe)
Getting An MRI Scan With Tourette's | What It Was Like
มุมมอง 564ปีที่แล้ว
Getting An MRI Scan With Tourette's | What It Was Like
Reacting To My Childhood YouTube Videos (I Was A 10 Year Old YouTuber)
มุมมอง 207ปีที่แล้ว
Reacting To My Childhood TH-cam Videos (I Was A 10 Year Old TH-camr)
Responding To Hate Comments & Funny Comments
มุมมอง 251ปีที่แล้ว
Responding To Hate Comments & Funny Comments
Ableism: Thoughts From A Disabled Young Adult
มุมมอง 368ปีที่แล้ว
Ableism: Thoughts From A Disabled Young Adult
Does Meditating To Weightless By Marconi Union Decrease Blood Pressure In Neurodivergent People?
มุมมอง 208ปีที่แล้ว
Does Meditating To Weightless By Marconi Union Decrease Blood Pressure In Neurodivergent People?
How Being Autistic Helped Me With Public Speaking
มุมมอง 236ปีที่แล้ว
How Being Autistic Helped Me With Public Speaking
My Chronic Illness & Disability Support Tools
มุมมอง 529ปีที่แล้ว
My Chronic Illness & Disability Support Tools
Stop Pressuring Autistic People To Act Neurotypical (unless a life or death situation)
มุมมอง 342ปีที่แล้ว
Stop Pressuring Autistic People To Act Neurotypical (unless a life or death situation)
"We Know You Can't Control It BUT" | Tourette’s Discrimination In Public
มุมมอง 766ปีที่แล้ว
"We Know You Can't Control It BUT" | Tourette’s Discrimination In Public
Ticcer Responds To "Guy With Real Tourette’s" Reacting To Tics & Roses 🌹
มุมมอง 1.4Kปีที่แล้ว
Ticcer Responds To "Guy With Real Tourette’s" Reacting To Tics & Roses 🌹
Rage Attacks | What You Need To Know (PANS/PANDAS & Tourette’s)
มุมมอง 1.2Kปีที่แล้ว
Rage Attacks | What You Need To Know (PANS/PANDAS & Tourette’s)
gotta question can you get realy bad muscle tension from this because i have muscle tension a year after having it I'm 14 btw
I would literally spend my recess at the swings (btw this was BEFORE I knew i was autistic)
Me trying to calm down
❤❤❤
Me after getting a compilment
I have a drug induced tic disorder that seems to be permanent. I automatically suppress around people and only minor ones come out. I don't know how to stop doing it and I'm afraid to with how nasty some of my vocal tics are.
I blow all my air out of my nose with a like double exhale. It cramps my chest and hurts sometimes so I try to be mindful to stop. I used to clench my core and do the same sort of a few years ago, but it went away
Essa doença é terrível , Deus abençoe por vc esclarecer e falar sobre a patologia 🇧🇷🇧🇷
Thanks for this video as I really struggle with chewing on my tongue which damages it. Since getting my chew necklace it has been great. 👍🏻 I am even chewing it while watching this. :)
Such an amazing clever articulate person. You have really helped us with your video, so informative. We have only found out about this recently and our son has shown these symptoms since being very young but he's now an adult and on Antipsychotics due to miss diagnosis and our GP and Early Intervention Team have never heard of Pans/Pandas. Much love and blessings to you ❤ 🙏
Thank you for addressing this!
Like the nice vibe
I have autism level 1
Hi, I wanted to apologize, I was not aware of anything I was saying and was projecting my negativity onto other people. Completely on me and it was out of line. I apologize
Guess what though? Autism isn’t an excuse for being rude. Autism isn’t an excuse to be an asshole. I’m kind of tired of seeing people cover for aspies that are just assholes
I agree - I have been abused by other Autistic people, however sometimes it's just a human mistake and the autistic person needs things explained to them rather than being demonised for something they're not even aware they did.
Autism isn't an excuse for abuse especially if the persons already been told, but at the same time if its something unintentional and you haven't told the person why that's harmful or its something that isn't really harmful or abusive like not making eye contact then that's not the same thing at all.
I must have watched a reel that mentioned tourettes, and decided to try and get a quick better understanding as to the causes/why. Did learn then about coprolalia. Enjoyed your video to help me better understand it, and how it relates to tourettes.
I have Anxiety I bite my finger but I try not to bite my finger that is not and use my chew necklace to get some more chewing Toys 🧸
Even harder for a single mom having to work and keep a special needs daughter happy without even thinking about herself at all… 😢😢
I am going to get one since I keep biting my nails
Psych meds caused me permanent POTS
these people who suffer from this health issue. need to try the Aquacure AC50 device.
I have tourret syndrom and autism spectrom
👍👍👍👍👌👌👌👌💖💖💖💖💖💖💖💖
Thank you so much for this wealth of information. :)
omg i have one,they are really good,especially with people with autism,sensory issues and stuff like that.just make sure to wash them regularly
I love how they fed off eachother
@@kingsknight7210 yeah unfortunately thats how it is with tourettes I have it and even if someone is whistling or something it with trigger me
I started to experience tics with PNES. Thank you for sharing this knowledge with us all ❤
I have them and are getting diagonosed hopefully Friday
for those wondering what it is about then, the answer is simply, it feels kinda like an itch
I bought one today because I'm literally destroying my lips with the biting
These seem good for me bc I have adhd.
I have adhd too and for me regular fidgets work well if you haven't tried!
you speak so well and articulately on all of this! could you maybe do some vlog-type videos on the channel?
the most aesthetic rave i’ve ever seen😂👍🏻
❤
I have TS but im trying to show my new friend what it is but so many people fake it but this is real tysm for spreading awareness ❤❤
What are the infections you have
Lyme Disease, throat infections triggered flares also and the Lyme specialist said I might have Borrelia Miyamotoi.
Ldn works on ocd for myself but not much for my pain
If ive got pans i must have had it 40 years untreated but son has same ocd atb13
Your videos are great so alike with autism and symptoms ive had and have
Where us inherited metabolic dr in uk
metabolicsupportuk.org/information/metabolic-centres-in-the-uk/
Pans mcas must be related with cirs
Did the crappy NHS test pick up your Lyme
I didn't get the NHS test as I heard about the low accuracy rate so I just got Armin testing
Autism comes with ill health alot due to mcas i think
Great video Courtney Snyder is good on these things holistic dr
Neurologist says my chronic upper body pain is migraine i dint have normal migraines since 2017 rhumo says its fybromyalgia huh
Ive liiked at neurosthenia and it was mostly folks with autism who have it diagnosed by dr beard who also had autism yes costs lot money for us whete are you going for mitrichondral function test
Have you got fybromyalgia CFS in your family to lost my mum to severe ms obvously linked to autism heds as autism folk get more auto immune
You should look into Lyme - it can run in families (Congenital Lyme - Infection spread through placenta) and can cause symptoms identical to MS including brain lesions and is also often misdiagnosed as Fibromyalgia or ME. I have family members with traits of those things but it is all Lyme.
@@ChronicAdvocateArmen clinic the best? Some say it's all the autism causing neuroinflamtion do you have muscle pain it would have to be natural treatments for me as antibiotics make me highly depressed to
Mostly only autistic folk i can get on with but alas took until 43 to get diagnosed my sins now diagnosed to
My grandfather was diagnosed 1930 s though wasnt called Asperger's then scxzoid personality disorders
Ldn helps ocd and fatigue but not oain for me