Awareness

Raising awareness about PANS - PANDAS - AE - BGE

[Awareness @RuudGrethe]

Name one thing you think about when you see the words #PANS #PANDAS 🟠🟢🔴#PansPandasHour

[Neurologist Mom @NeurologistMom]

Herpes reactivation is a critically important issue that many clinicians still ignore. I hope HHV-7 will be one of the next viruses seriously investigated. When HHV-7 antibodies were found in my daughter’s CFS workup, my colleagues dismissed them as an “innocent” finding and said they could not possibly explain her 50 to 100 daily focal seizures. After I started valacyclovir, the seizures “magically” stopped.

[PANDA Mama @PandaMama2024]

Hearing a lot lately about stubborn #mycoplasma causing neuropsychiatric symptoms, usually a co infection with Lyme etc? Not ourselves thankfully, but quite a few others. Can come along with strep but very resistant.

[Hope @hopestardust20]

#PansPandasHour
Treat the root cause of brain inflammation
#Pans #Pandas

[PANDA Mama @PandaMama2024]

#PansPandasHour

[Notes to my boy ✉️ @notestomyboy]

@Definitely3s He couldn’t, he was too ill. He changed over night aged 9 due to PANS PANDAS. He suddenly became unable to do anything he did before including washing, dressing or leaving the house. Took him over 5 years to start to come back into the World.

[Notes to my boy ✉️ @notestomyboy]

Another day, another happy update ⭐ today my Boy did his Maths GCSE. Told his Mom it was hard which is to be expected after he’s missed the whole of high school.

But here’s the best bit. He had to go into his form tutor class for 30 mins before the exam. He was shocked that everyone knew who he was (he’s never attended a high school lesson before) and was happy to see him.

He asked his tutor how come they all knew him….. he replied “I’ve read your name out on the register every day for 5 years and you’ve never been here, so they all know who you are and are happy you’ve made it in”.

How good is that? Made me cry anyway. I’m so grateful they read his name out everyday and didn’t forget him 🙏

I love you Son and always proud to be your Dad ❤️

[Awareness @RuudGrethe]

@notestomyboy Yes! ♥️Have a great weekend!

[Notes to my boy ✉️ @notestomyboy]

When I think about being a Dad, the 3 words that most often come to mind are protect, provide and support.

I’ve not had contact with my Son now for over 6 years, for the first 5 years he couldn’t even ask for anything or accept gifts, even birthdays and Christmas.

I’ve been able to provide, but from a distance and only in a general way. Every day without contact I’ve felt lost in not being able to even do the basics, or even know what his needs are.

He changed overnight a few months after Scarlett Fever and went from a perfect child to one consumed by fear and OCD, he didn’t wash or dress for 5 years. He saw nobody apart from those in his house, which he was unable to leave in all that time.

6 years on and he’s doing much better, he will return to school to sit some GCSE exams this week. He’s not been to school since Feb 2020. He went to Berlin to explore the City on his own for 3 weeks. His strength and bravery after so long are humbling.

He was stuck down by PANS PANDAS for so long but never complains and is just focussed on moving forward.

I’m still yet to have contact with him but I’m confident it will happen soon.

There are many other children and their families struggling like this and @PANSPANDASUK have been such a lifeline that I can never thank them enough.

Last year a team of us from @gemini_wealth raised £7,000 and we’re trying to grow that this year. 17 of my amazing friends and colleagues are running to raise money for PANS PANDAS UK on 31st May. If you can spare something it would be very much appreciated.

If not, just a like or retweet would be amazing thank you. 🙏

I love you Son and always proud of you ❤️

MARK is fundraising for PANS PANDAS UK. Check out their @JustGiving page and please donate if you can. Thank you! #JustGiving https://t.co/RwFmUn0k6s

[joanne gill @joanneG007]

#PansPandashour
ONE DAY #PansPandas will have #NHS #NICE GUIDELINES

[joanne gill @joanneG007]

#PansPandashour

[Awareness @RuudGrethe]

#PansPandasHour

[Brain Inflammation Collaborative @BrainInflCollab]

A recent study found that 0.49% of the brain mass analyzed was microplastic. Here are the results from an alarming new report.

NIH scientists reported a 50% increase in microplastics in the brain from 2016 to 2024. These microplastics are plastics 5 mm or less in size and can enter the body from:
- air
- food and water
- plastic packaging
- synthetic clothing
- industrial liquid waste

The amount of microplastics was roughly 10 times higher in the brain than in the liver.

Matthew Campen, NIH toxicologist and co-author, said the amount of plastics his team found in the brain samples was more than he "ever would have imagined or been comfortable with."

According to Martin Wagner a toxicologist from the Norwegian University, these microplastics can be proinflammatory: "[Microplastics] provoke an inflammatory immune system response designed to get rid of them, just as the body would fight bacteria—only the microplastics can’t be destroyed so they trigger chronic inflammation."(1)

The study also reported higher microplastic levels in the brains of deceased patients with dementia.

Could microplastics be partly to blame for the rise in neuroinflammatory conditions, mental health issues, and dementia?

Let us know your thoughts by leaving a comment below.

Citation:
1. Microplastics are harming our health. Here's how to reduce your risk | Fortune Well

Full study here: https://t.co/8I7RUiXTKP

[Awareness @RuudGrethe]

#PansPandasHour

[Neurologist Mom @NeurologistMom]

This is iatrogenic PTSD resulting from the immense amount of gaslighting by the physicians patients interacted with. Even I, as a physician myself, am suffering from the same thing and limiting my interactions with colleagues about my daughter’s disease. This is not a side issue

[PANDA Mama @PandaMama2024]

@rtenews #PansPandasHour

[PANDA Mama @PandaMama2024]

@CarrollJennifer @roinnslainte @CcoHse

[PANDA Mama @PandaMama2024]

#PansPandasHour

[Awareness @RuudGrethe]

#PansPandasHour

[Candace D. @DiaryofaSickGrl]

What’s the worst medication? 💊

[joanne gill @joanneG007]

#PansPandashour

[Awareness @RuudGrethe]

#PansPandasHour

[PANDA Mama @PandaMama2024]

#PansPandasHour

[joanne gill @joanneG007]

#PansPandashour