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      • 2019 Awareness Day
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  • NEPANS Blog

PANS PANDAS Family Stories, Articles, Announcements

PANS Awareness Day & a Family Story

10/9/2016

 
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 If you are on Social Media at all, then you have seen the multitudes of posts about PANS PANDAS Awareness Day today.  Some posts have just the facts. Some posts are personal.  NEPANS is made up of both professionals working and those who are parents to with children with PANS and so we try to cover both points of view. I myself am a Mom who wants to support families and help provide resources to professionals so little kids like my own are helped quickly and thoroughly.  Below is a short view into what it was like when our son first had PANS symptoms. It is not the full story. But a glimpse into our life with PANS. After you are done, please share at least one of the resources on this website.  Awareness really does spread one person at a time. It was one person that told me to look into PANDAS. You never know who you can help by sharing what you know. And last but not least, tomorrow might not officially be PANS Awareness Day but the sharing should not stop. Thank you for help. Thank you for reading.

Best,
Gabriella True, NEPANS Board President



Read More

TJ's Awareness Day Letter to His Teachers

10/8/2016

 
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TJ wrote a letter to all his teachers requesting they educate themselves on PANS PANDAS so no child had to suffer for as long as he did prior to correct diagnosis and treatment. You can read TJ's PANS PANDAS story from his own words and his story from mother's perspective.
Dear Teacher,

My name is TJ, I am a freshman at in High School, and I have PANS.  As a school project I have decided to raise awareness of PANDAS/PANS.  Contacting my former teachers and their colleagues is only the beginning.   As recently as last week, I was reminded how good it felt to talk to other kids like me, I decided to write a book geared towards kids 8-16 – sharing stories.

Most of my teachers were amazing and continue to still support me.  However, there were a few teachers and nurses that were, well, mean.  They were quick to label me “bad” when I was not “bad” before.   My hope and the reason I am writing this is to educate the educators, reminding them that it isn’t always what it appears and sometimes there are reasons.  PANDAS/PANS is a physical medical condition with emotional symptoms, (I say my brain has strep). 

You are the front line to this, I ask you to help spread awareness.   If you see a child – out of sorts… not themselves, save that child - consider that this may be a medical problem, not a behavioral problem.  PANDAS/PANS is real – it is not an excuse.  My auntie is a teacher and because of my story, in June, told a parent to check into this.  Over the summer, this student was diagnosed and came back to school a new person – and will graduate this coming June with honors (he failed and stayed back in 9th grade).

Here is my story.  Fifth grade (2009) started like all other years – excited to see my friends, celebrating my 10th birthday, anxious to hear my name to see who my teacher was, but more importantly, to see which friends were in my class.  That was my biggest challenge, to be with my friends.    There was a lot of craziness with H1N1 and I spent Halloween stuck sick in my house.   A few months later, I went to zoo camp – I loved zoo camp – attending since I was 2.   On Thursday, Mr. Chris had to call my mom I was under the table and wouldn’t come out.  The next few months (well years) were scary.  I spent so much time at doctors, hospitals, and programs.  I could not attend school – I could not leave my house.    I took a lot of different medicines for a lot of different things.  I thought I was going insane.  Nobody could tell me what was wrong with me, not even my mom.   The school department and some teachers were very mean – I would but I was not able to go to school.   What I wanted was something I was unable to do.  I missed my friends.  My mom had to home school me because no one understood what was going on.  People push away what they don’t understand.

Read More

TJ's Story in His Own Words

10/8/2016

 
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TJ created this project below for school and then he also wrote a PANDAS PANS Awareness Day letter to all his teachers requesting they educate themselves on PANS PANDAS so no child had to suffer for as long as he did prior to correct diagnosis and treatment. New England PANS PANDAS Association (NEPANS) is so thankful to TJ and his mom for sharing his story.  His mother also wrote TJ's PANS Story from her perspective.

My Story - PANS Project

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The month of August has always been a month of celebrations, trips, parties, and friends.  August 2009 was no different – A trip to Camden Yards, a visit with the Orioles in their clubhouse, a meet and greet on the field with Red Sox, a game of wiffle ball with Orioles mascot on field in front of fans, a camping trip with friends, a deep sea fishing trip, an amazing party with friends, family, and new neighbors.  I always had friends laughing and hanging without any anxiety.  I was excited for school, alert, outgoing, and absolutely no behavior issues or anxiety.   

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September 2009 - I missed the first week of school because I had strep throat and an ear infection.

October 2009 – I had H1N1 and was quarantined – it was very scary.

November 2009 – I was required to get the H1N1 vaccine to return to school.

December 2009 – Symptoms started to appear.  Gazed look, large pupils, blank stare, no expression, pale coloring, puffiness, sleepiness, anxiety.

February 2010 –  After my first Grand Mal Seizure - The beginning of tests.  EEG, CAT Scans, MRI, Spinal Tap.

Read More

Massachusetts Observes PANDAS Awareness Day Annually

10/7/2016

 
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Massachusetts, in 2013-2014, passed a Bill declaring PANDAS/PANS Awareness Day is to be a observed annually on October 9th. 

Hopefully in years to come through the efforts of our community and New England PANS PANDAS, all states in New England will pass similar Bills.
PANS PANDAS Awareness Day 2016
Legislative News

Rhode Island Declares PANDAS Awareness Day!

10/7/2016

 
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Thank you to NEPANS Board Member, Emily Klein, for requesting the PANS/PANDAS Awareness Day Proclamation!

New England States celebrating PANDAS Awareness Day:
Massachussets
Rhode Island
Connecticut
New Hampshire
PANS PANDAS Awareness Day 2016

New Hampshire Declares October 9 as PANDAS/PANS Awareness Day!

10/7/2016

 
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Thank you to Sarah Gerlack, New Hampshire PANS PANDAS mom, for requesting the PANS/PANDAS Awareness Day Proclamation.

Awareness Day 2016

NE PANS PANDAS Association is working on hard on educating the community about PANS/PANDAS.  To celebrate PANDAS Awareness, we will host a table at The Pumpkin Regatta, a large community event in Goffstown!
Community Outreach Events
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PANDAS Awareness Day ... Getting Ready

10/5/2016

 
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Are you a parent of a child with PANS PANDAS? or a grandmother or a sibling or that amazing aunt, therapist, or friend?

Join with NEPANS and the entire PANS PANDAS Community in supporting PANS PANDAS Awareness efforts every day and especially on PANDAS Awareness day on Sunday, October 9, 2016.  Below, please find an overview of ways to help spread awareness. NEPANS will be posting calls to action via Facebook, Twitter and here on the NEPANS Awareness Day page.

  • Share the NEPANS PANS PANDAS Information Sheet.
    • Print it out and bring it to your school district, doctors, therapists, local moms groups, community bulletin board, etc. Or, post it on your facebook page!

  • Display the NEPANS Awareness Posters at your school
    • Many schools have a community bulletin board or will let you create a feature in the lobby on various awareness efforts. Put PANS PANDAS in the spotlight!

  • Change your Facebook Profile to
    • NEPANS Awareness Day Logo
      • Download the NEPANS logo above and upload to your facebook profile!
    • Custom Awareness Day picture
      • Create Awareness while showing the love you have for your PANDAS/PANS child! For more information please see the PANS PANDAS Awareness Day facebook page

  • Read the new PANS Family Stories.  Share the new Family Stories. Submit your Family's Story!
    • Read & Share Stories
    • Submit YOUR Story

  • Send the new PANDAS PPN Fact sheet to your doctors.
Awareness Day 2016
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Connecticut Proclaims October 9th as PANDAS Awareness Day 

10/5/2016

 
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It is official!!  For fourth year, Connecticut has declared October 9th as PANDAS Awareness Day in Connecticut.

NEPANS will host an PANS PANDAS Information table at  the CTFSN conference on Friday, November 7 in Hartford, Connecticut.
2016 Awareness Day
Community Outreach

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I take great pleasure in congratulating you on the commemoration of
PANDAS Awareness Day
Sunday, October 9th 2016

This day symbolized Connecticut's recognition of efforts to fight the battle against PANS and PANDAS by advancing awareness, access, preventative measures and treatment.

It is important that the citizens of Connecticut become aware of the plight of these disorders, and share this knowledge with others in hopes of winning this battle.

May New England PANS PANDAS Association continue to spread awareness and equip their fellow citizens with this important information and resources.

Signed - Nancy Wyman, Lieutenant Governor

Submit YOUR PANS PANDAS Family Story!

10/3/2016

 
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No one can tell the stories of what it is like to live with PANS/PANDAS like those that have experienced it. The list of symptoms and descriptions of various treatment protocols does not bring the condition to life. The family or patient telling their individual story is what illuminates the day-to-day struggles and triumphs our children and families experience.

For families living with PANS/PANDAS, the aim of sharing these stories is to help you not feel so alone in your struggles, to let you know there is a family out there just like you, and ultimately to let you know that there is hope. For those who are just beginning to learn about this autoimmune disease, we hope you begin to understand PANS PANDAS with greater depth.

As more stories are contributed, a wider picture of what the condition is like will form including how many similarities there are and how many differences there are in its manifestation, in the path to diagnosis, in treatment options and in the outcomes. NEPANS invites you share your story with us today. Below are the guidelines for submitting a PANS PANDAS Family Story.

Submit Your PANS Story

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  • About Us
    • Mission & History
    • Our Board
    • NEPANS Newsletter
    • Contact Us
  • PANS/PANDAS Info
    • Before/After PANS - Examples
    • PANS/PANDAS Symptom Severity
    • OCD
    • PANS/PANDAS Rating Scales/Tracking Tools
  • Resources
    • PANS Information pdfs
    • Awareness Posters
    • PANS Family Stories
    • Websites/Studies/News >
      • JCAP-Treatment Guidelines & Consensus Paper
      • Research, Studies, Journals
      • Web Articles & Fact Sheets
      • In the News
    • School Resources >
      • Symptoms & Supports
      • Before/After PANS Examples
      • Nurses & Health Care Plans
      • Absences & Homebound
    • Video Library
  • Events
    • Upcoming Events >
      • Outreach Events - Presentation, Tables, Information
    • Past Events >
      • Reaching Recovery Evening
      • NEPANS Integrative Medicine Conference
      • CEC Convention
      • My Kid Is Not Crazy
      • Lecture Series
      • Family Events
      • Family Picnic w PANS Life
      • CT Conf-2014
      • NH Conf-2014
      • Dr's Breakfast-14
      • Parent's Q&A-14
      • RI Conference-2013
      • NEPANS Supported Events
    • Speaker Bios
    • Support Groups
  • Get Involved
    • PANS PANDAS Awareness Day >
      • 2019 Awareness Day
      • 2017 Awareness Day
      • 2016 Awareness Day
      • 2015 Awareness Day
      • 2014 Awareness Day
      • 2013 Awareness Day
    • Spread Awareness
    • Legislative News >
      • CT Legislative News
      • MA Legislative News
      • NH Legislative News
  • NEPANS Blog