Moms Fighting Epilepsy

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Moms Fighting Epilepsy Moms Fighting Epilepsy, is a page to support and share knowledge about this neurological disorder and its many facets.

04/12/2023

Dentatorubral-pallidoluysian atrophy (DRPLA) is a rare
autosomal-dominant neurodegenerative disorder. It is one type of the rare Progressive myoclonic epilepsies
characterised by various combinations of epilepsy, myoclonus, cerebellar
ataxia, choreoathetosis, dementia,
and psychiatric symptoms. First described in Japan,
where it is most prevalent, molecular diagnosis has
allowed detection of the disease in other ethnic
groups. There is substantial heterogeneity in clinical
presentation, even in the same family. There are three
clinical forms: an ataxochoreoathetoid form, a pseudoHuntington
form, and a PME form. Patients with onset
before age 20 years often present with the phenotype of
PME, characterised by ataxia, seizures, myoclonus, and
progressive intellectual deterioration.
DRPLA is an autosomal-dominant disorder, caused by
unstable expansion of CAG repeats of a gene at
12p13.31.98,99 The discovery of the DRPLA gene has made
it possible to analyse the diverse clinical presentations on
the basis of the size of the expanded CAG repeats. There
is also an inverse correlation between the age at onset
and the size of the expanded CAG repeats. DRPLA is
characterised by prominent anticipation with a mean
acceleration of age at onset of 26·5 years (SD 2·4) in
paternal transmission and 14 years (SD 4) in maternal
transmission. MRI findings include atrophy of midsaggital
structures of the cerebellum and brain stem,
particularly the pontine tegmentum. There is strong
inverse correlation between the age at diagnosis by MRI
and the areas of atrophy in patients with large expanded
CAG repeats. However, cerebral white-matter
involvement is associated with the duration of the illness
rather than with the size of the CAG repeats.100 Diagnosis
is confirmed by identifying the abnormal CAG repeats.
- Amre Shahwan, Michael Farrell, Norman Delanty
neurology.thelancet.com Vol 4

Hi everyone !! During NATIONAL EPILEPSY AWARENESS MONTH.   My youngest son and I had the opportunity to go one our local...
01/12/2023

Hi everyone !! During NATIONAL EPILEPSY AWARENESS MONTH.
My youngest son and I had the opportunity to go one our local monrning show “Good Day Philadelphia” on Fox. He was spotlighted as the Epilepsy Warrior.
In case you do not know our story.
I began this page after my youngest son was diagnosed with epilepsy. Shortly after my eldest son had his first seizure.
Looking to connect with others and share whatever information I could get my hands on and to build a community of moms that could also share their information as well as be a support for one another, this page was born as well as the private group “Moms Fighting Epilepsy” Moms Fighting Epilepsy since some moms requested a private space where they could post without their posts sharing to their personal pages.

Here we are - still building community this many years later.

Recently, an opportunity presented itself to work with the Epilepsy Foundation of Eastern PA.
I am so grateful God opened this door.

I now advocate, educate, find resources, make connections with medical professionals and so much more not just for my sons but for all those I serve in the position of Multicultural Outreach Coordinator in 5 specific counties and serve as the bi-lingual coordinator serving all 18 counties in PA.



Here is the Fox 29 clip.

Epilepsy warrior Angel Locke joins Good Day Philadelphia to bring awareness to epilepsy, and discussing his experience with the brain disorder.

01/12/2023
30/11/2023
Happy Thanksgiving to each precious family living with   whether it you who has epilepsy or child or someone you love!! ...
23/11/2023

Happy Thanksgiving to each precious family living with whether it you who has epilepsy or child or someone you love!!
Have a Blessed Thanksgiving to each of you!!

18/11/2023

Our change of name to SUDEP Action was a powerful moment in our story. The change was in recognition of our own work, alongside researchers, in defining SUDEP and our role as a global leader in this field.

To learn more about our story, go online:
https://sudep.org/journey-sudep-action-whats-name

16/11/2023

What are you doing to bring Epilepsy Awareness this month??
Share your pics and efforts with us!

07/11/2023

Reminder to please report anything on our page that is NOT related to Epilepsy.
No herbal remedies or sales !! You will be deleted

For those interested!
04/10/2023

For those interested!

Starting October 2nd at 9 AM EST, the Lion's Foundation of Canada will begin to accept applications of interest for their Seizure Response Dog program. Please visit https://bit.ly/3LBBxim for more information and to see the application process. Thank you to the Canadian Epilepsy Alliance (CEA) for sharing this exciting news!

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19/08/2023

Thank you and well done to Sarah Lee, John Tween and Rebecca Collingwood for taking on the Nottingham 10K in loving memory of Chris Tween. The fantastic trio raised a brilliant total of £881.

04/08/2023

EXERCISE
Exercise is important for many aspects of epilepsy, although it can be problematic. Weight-bearing exercise helps maintain bone density, which can be reduced by many of the medications, particularly the older ones. Exercise can also help to prevent weight gain, which is a problem with some drugs. There have been some reports that exercise may trigger seizures in some patients, but this is uncommon. A number of studies have found no significant association between physical activity and a higher incidence of seizures in patients with epilepsy. Nevertheless, if patients are concerned they should discuss this issue with their doctors.
Some small studies have reported significant benefits from the practice of yoga, which employs weight bearing and balancing postures.-NYT

04/08/2023

Too many people with epilepsy are not told about risks linked to the condition. But learning about them can help you understand when you might need to take positive steps to implement changes. Find out more here: https://sudep.org/epilepsy-and-risk

28/07/2023

Good Morning Everyone!
Let this be a day like no other, press forward, stay positive, lean on your village. Remember, every struggle grows your character. Even the hardest times teach us something!

Have a Blessed day!

23/07/2023

Pathological Activity Within Limbic Circuits:
Because epilepsy is a major disorder associated with the limbic system and, in particular, with temporal lobe structures, we include the following discussions of epilepsy and the application of the electroencephalogram (EEG).

Measurement of Brain Activity: The Electroencephalogram

The EEG is recorded at the scalp and sometimes from the surface of the brain during epilepsy surgery. It measures potential differences between two active electrodes on the scalp or between a scalp electrode and an inactive electrode, which is usually placed behind the ear. The EEG measures the summation of excitatory postsynaptic potentials (EPSPs) and inhibitory postsynaptic potentials from the scalp. Because these signals are low in amplitude, a differential amplifier is used to make the waves more visible. Gold or platinum electrodes are placed on the scalp after thorough cleaning with an abrasive agent. The pins from the wire attached to the electrodes are plugged into a jack-box that is attached by cable to the amplifier.

There are many characteristic waveforms seen on both normal and abnormal EEGs. For instance, when a normal subject lies quietly, an alpha rhythm is found in the occipital leads. This disappears with eye opening. If this rhythm is slow or absent, then there may be a neurologic problem. Continue to link: http://what-when-how.com/.../the-limbic-system.../

23/07/2023

On July 30th, 2023, 11AM-2PM, we will be having our Melt the Isolation event! 🎪

This will be a full day of fun with family activities including, face painting, carnival games, food trucks, local artist Dean Stanton and local musical talent Turner B.

We look forward to seeing you, as we gather together our community to melt the isolation!

For more information: https://www.epilepsycalgary.com/melt-the-isolation/

🥺 Realities of Epilepsy !
14/07/2023

🥺 Realities of Epilepsy !

04/07/2023

What is your biggest struggle right now?

25/05/2023

My experience with brain surgeries

We are officially Walking to End Epilepsy on June 17th !! You can walk in person or virtually. Join our team!
18/05/2023

We are officially Walking to End Epilepsy on June 17th !!
You can walk in person or virtually.
Join our team!

Hello Team Locke ! Thank you for supporting us in this years walk! You all know how personal this cause is to our family. Every dollar helps aid the advocacy and education of those affected by Epilepsy in Eastern Pennsylvania!!

25/04/2023

Mental check-in mommas !!!
How are you doing out there?

14/04/2023

We hope you all have a Nice an Seizure Free Weekend..your buddy..seize.

14/04/2023

Thank you all for your diligence in reporting those spam posts.
False information on our page will not be tolerated.

01/04/2023

Ladies please do not respond to any of the posts pushing herbal remedies they are scams
Please do not respond and report to admin asap so we can remove the post immediately

29/03/2023

Bringing Epilepsy to the forefront, Purple Day Every Day's goal is to create Global Public Awareness. We help to eliminate the fear and stigma associated with epilepsy and brain trauma. The Anita Kaufmann Foundation was established in 2004. Visit us now!

27/03/2023

How was Purple Day for Everyone?
Post your pics and tag us!

03/03/2023

Get your purple day gear ready. We want everyone to post their PURPLE on March 26th for Purple Day!!

Make sure you use the

03/03/2023

I need to be cautious in case of a seizure

Big shout out to our newest top fan! 💎James Mary Beth Price
03/03/2023

Big shout out to our newest top fan! 💎

James Mary Beth Price

25/02/2023

This striking image was painted by Lucy Jones to reflect the stigma faced by people who live with epilepsy.

Titled, "She’s Not Right In The Head", Lucy tells us how "the stigma of epilepsy often leads people to see you as crazy or a bit slow. They rarely look at you and see a unique human being dealing with an invisible illness. As icons like Van Gogh show, despite a damaged brain we are capable of producing great beauty and creating wonderful things."

24/02/2023

Ladies,
If you notice we have been getting a lot of spam via comments on our posts. Please report anyone suggesting herbal remedies immediately!

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