Are you Aware of PANDAS/PANS Awareness Day? I talked about PANDAS/PANS Awareness Day in the GR8 ADVOC8 on the 8s May edition here (see #3). Let’s talk about it some more.
Since 2013, October 9th has been declared PANDAS/PANS in the United States and around the world. One of the biggest ways to celebrate in the USA is to get your state’s governor to make a PANDAS/PANS Awareness Day proclamation. Also on or around October 9th, many groups plan special events or activities or meetings or fundraisers. Facebook and other social media sites are also full of PANDAS/PANS information. In fact, PANDAS Sucks was born on October 9, 2013, the first PANDAS/PANS Awareness Day. You can read my Awareness Day/Birthday blogs here: October 2013, October 2014 #1 , October 2014#2, October 2015#1, and October 2015#2.
Do YOU want to have a PANDAS/PANS Awareness Day in your state this year? I have 3 EASY STEPS to help you make that happen:
Step 1. Know the date! PANDAS/PANS Awareness Day will be observed globally on Sunday, October 9, 2016. You may find that if you plan activities, that the date may need to be adjusted for those events. The official date is October 9th, and if you try to get a proclamation, use that date.
Step 2. Contact Your Governor’s Office. It can take some time to get a proclamation approved. I usually procrastinate, but I filed early this year (I’m still waiting to hear about approval). To find your state governor’s web site, click here. You can call your governor’s office or search “proclamation” on your state’s web site to find more details. Some states will have an online form that you fill out. This year, Kentucky had a form that I needed to email because the web site was being revamped (new governor). Just check with your state to find out the specific steps.
It’s usually a simple process to request a Proclamation, but just because you ask for it does not guarantee you will get one. Some states will say Yes. Some states require you to submit a few years before they will approve it. Some states always say No. But even if you do not get an official Proclamation. you can still celebrate the day unofficially. And if your state says no, you might ask your city’s mayor because the process may be easier on a local level. (AND if you end up procrastinating, your city might be a quicker route for an Awareness Day. Just sayin’…and yes, I’ve been there and done that. LOL 😉 )
I’m not sure what our International PANDAS/PANS Families would do for Awareness Day proclamations. Maybe check with your province or city or municipality or whatever you think would be easiest. The idea of a Proclamation should be available in most places. Your steps may vary to achieve PANDAS/PANS Awareness Day. Please let me know if you’ve been successful at this and would like to give tips to other international groups.
Click here for examples of other State and City Proclamations in the state of Kentucky. Below is the wording I submitted for the PANDAS/PANS Awareness Day “WHEREAS” clauses this year. (In the past, the state has altered the wording I submitted. Ugh. We’ll see what happens this year.)
WHEREAS: Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) are conditions that can seriously affect a child’s health; and
WHEREAS: A diagnosis of PANDAS or PANS means a child has a sudden, dramatic change in personality displayed as Obsessive Compulsive Disorder (OCD) together with accompanying symptoms. In PANDAS, it will occur following a strep infection, and in PANS, it follows a bacterial infection other than strep or a virus. The OCD can display as intense fear or anxiety. Accompanying symptoms may include tics, anxiety, depression, behavioral regression, deterioration in school performance, sensory issues, severely restricted food intake, and more; and
WHEREAS: Researchers have begun to substantiate that this medical condition involves a misdirected autoimmune process that irritates a region of the brain that manages a variety of functions such as movement, cognitive perception, habit, executive thinking, and emotions; and
WHEREAS: PANDAS and PANS are clinical diagnoses (meaning no lab tests are available) and may be misdiagnosed and undertreated. Treatment of this medical condition varies by the needs of the child, but it may include antibiotics, intravenous immunoglobulins (IVIG), plasmapheresis, anti-inflammatory medications, cognitive behavior therapy, and/or other emerging treatments; and
WHEREAS: Greater public awareness of this health issue is needed to promote further research and to increase activity at local, state, and national levels:
Step 3. Join the PANDAS/PANS Awareness Day Facebook Page. This is a good way to get up-to-date information and share news about your state’s or group’s activities. It will become more active as it gets closer to October 9th. You can also check with the major PANDAS/PANS organizations and watch their social media to see what they’re up to for PANDAS/PANS Awareness Day. PANDAS Sucks will bring you new blogs as new info becomes available too.
BONUS Step: Start planning activities for your group to celebrate PANDAS/PANS Awareness Day. Send a letter to the editor of your paper. Give a presentation at your child’s school. Hold a fundraiser for your favorite PANDAS/PANS non-profit. Have a t-shirt sale. Deliver info to pediatrician’s offices in your area. Put on your thinking caps and start thinking about what YOU want to do to promote PANDAS/PANS Awareness Day. You can look for more ideas for PANDAS/PANS Awareness Day via PANDAS Network’s site here. I also covered some ideas in this previous PANDAS Sucks blog. In Kentucky, some of us get together for dinner/drinks, we donate PANDAS books to the library, and we use the heck out of social media. Our group also has a few other events we do to raise Awareness throughout the year since any day can really be PANDAS/PANS Awareness Day. 🙂
There ya have it. In 3 Easy Steps, you can get started on your way to an awesome PANDAS/PANS Awareness Day 2016. Have fun!
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor. P