Wernickes Foundation of America, Inc

03/03/2024

Happy birthday to my beautiful wife!

12/11/2023

As I continue to survive post Wernicke's Encephalopathy, I was recently hospitalized for enterocolitis leading to an acute adrenal crisis.

So much for the NIH study which suggests that Wernicke's patients have an 8 year average survival, so according to them I am on borrowed time.

Despite all that, I want to take the opportunity to recognize healthcare providers that have made a material difference in the emergent recognition of Wernicke's and the immediate treatment with high dose thiamine at 500mg q8, or higher doses until conditions improve.

These people are true heroes and deserve recognition but we can't give it without your stories and the candidates you are proposing for the award to [email protected] by December 31st, 2023.

12/10/2023

Have you experienced receiving high dose thiamine IV 500mg q8 at the time of your Wernicke's Encephalopathy event?

And was the condition recognized by a healthcare provider and the medical decision making process identified and immediately treated with high dose IV thiamine, 500mg q8?

If so that person deserves to be recognized for their heroism.

The Wernicke's Foundation of America, Inc will recognize and record on our website the recognition.

But the recognition has to come from you! Please submit your candidates by December 31st, 2023 to [email protected].

Respectfully,

Sean Byrne, CEO
Wernicke's Foundation of America Inc

05/20/2022

If anyone in this group can balance enough on a bicycle to make it to their work, you deserve a medal! 🚲🚲🚲🚲🚲🚲🚲🥺

05/15/2022

Well, after a 7 year battle, I finally settled my lawsuit because the hospital failed to give me any thiamine for 10 days after I presented with a seizure.

There IS relief available if you or your loved ones suffered WKS because the hospital failed to diagnose me, even though I had all the symptoms of Wernickes’s.

PM me, and I can go over with you the specifics of my case.

I am not a lawyer or doctor but know more about WKS than most doctors. I also have strong connections with WKS lawyers, and am delighted to share my contacts.

Nobody told us how stressful and soul destroying a lengthy lawsuit takes on us.

But finally with the shadow of the lawsuit no longer hanging over us, a huge weight has been lifted!

-Sean

03/24/2022

Sadly, even us small nonprofits are subject to cyber attacks. Some malicious group has stolen the domain Wernickes.org.

We don’t have the financial resources to pay the ransom, so have switched our domains to wksfnd.org

If you are web/tech savvy, I could use your help.

Seán Byrne

Offers support and guidance to any healthcare professionals, patients and heir caregivers. wernicke korsakoff syndrome

05/02/2021

One of the major questions that we get 2-3 call per week on, is “What sort of specialized care is available for WKS patients?”

If you have been lucky enough to find such a place in the US. We regularly reach out to nursing homes, especially if they claim to specialize in dementia. Here is one such response from a local dementia care facility that claims to specialize in dementia, of which Korsakoff’s Syndrome is defined is the DSM-V, as a form of dementia. Here’s hoping you have better luck, and post your answers here. We’ll maintain a database of customer reviewed nursing home that actually “get” WKS patients and understand their unique needs.

The most disheartening stories are of relatively young patients (40-50) that find themselves in a locked dementia ward with most patients in their 70’s-80’s. Clearly a different level of care is needed.

If you can spare just $5, we can keep the work of the foundation going.

https://wernickes.org

04/17/2021

Interesting article about thiamine has depleted during covid-19.

Article Related content Article metrics Rapid responses Response Rapid Response: Re: Long covid: How to define it and how to manage it I maintain that the symptoms of COVID-19 are induced by the fear and anxiety and social isolation (lockdown) which results in 1) greater consumption of alcohol; 2) g...

02/14/2021

I’m just thinking out loud here, and we all know that there is no post-diagnosis care or follow up plan for patients that survive a Wernickes Encephalopathy event. The only treatment is to send people home with an Rx for 200mg oral thiamine, and possibly Aricept to combat Korsakoff’s syndrome.

What if we started treating WKS patients for what they just suffered: a hypoglycemia brain injury?

After all, Wernickes’s is caused by an acute (sudden) thiamine deficiency, no matter how it’s caused. Your body doesn’t produce thiamine and a healthy liver can only store 14 days worth of thiamine reserves. Thiamine is a necessary co-enzyme for the breakdown of carbohydrates into useable glucose. During an acute thiamine deficiency, your cells throughout your body begin to die from glucose starvation. Where we notice it first is when the hypoglycemia affects the Central Nervous System, and we see the triad of symptoms of Wernickes, namely gait ataxia, nystagmus, and global confusion.

Ask your neurologist when you next see him/her why this wasn’t done for you or your loved one.

Surely there are treatments for a hypoglycemic brain injury and those protocols should be followed for WKS patients.

At the very least, the root cause of the thiamine deficiency should be identified and treated.

The medical field needs to sit up and take notice that there are treatments for WKS, they are just never being used or prescribed.

-Sean

Come February 28th marks 6 years post WKS.

01/03/2021

10/31/2020

As we hear in the news as studies on the long term effects of covid, I am wondering if the medical community is considering they they may be dealing with a case of WKS.

I can certainly see the case where an alcoholic or gastric surgery patient is brought to the ER unable to have their loved ones around to advocate for them. The medical staff were too busy trying to beat covid, they perhaps overlooked the patients need for thiamine, especially if they end up on a vent.

How do we get the word out?
1. We contact medical journals to see if they would publish an article updating medical personnel to be on the lookout for a thiamine deficiency.
2. We call doctors.
3. We call the chief medical officer of university hospitals
4. We maintain a website with up to date links section with updated articles about WKS.
5. We put a covid advisory page up on our website

And will talk to anyone that calls about the condition.

09/25/2020

https://www.ncbi.nlm.nih.gov/books/NBK430729/ -31339.s7

Here’s a more recent article about WKS, and is a good ‘first read’ as you educate yourself about this preventable syndrome.

Wernicke-Korsakoff syndrome is a common complication of a thiamine deficiency that is primarily seen with alcoholics. This syndrome was classically described as a clinical triad consisting of altered mental status (i.e., confusion or dementia), nystagmus (or ophthalmoplegia), and ataxia. However, le...