PANDAS Sucks exists to tell our collective story about PANDAS/PANS. How it affects our children. How it affects our families. How it affects us personally and changes us. How it affects everything. How we ALL can heal and recover. Let’s tell the world together why PANDAS Sucks.
On the web site, we asked YOU to complete this sentence, ” PANDAS Sucks because….“, and YOU* did. (Thank you!) Here are a some reasons YOU said PANDAS Sucks!!!
PANDAS SUCKS because…it steals your kid from you and makes his childhood so much harder than it should be. (S.J.)
PANDAS Sucks because…it has over taken all the good times and replaced them with the bad. It has hurt me as much mentally as it has hurt my child. It is a family illness not an individual one…”we” are in a flare…”we” have a doctor’s appointment…”WE” are all in this together. (S.M.B.)
PANDAS Sucks because…My daughter used to look AT me with her beautiful hazel eyes. Now she looks THROUGH me with vacant eyes. (A.)
PANDAS Sucks because…schools don’t know what to do with our kids. (L.H.)
PANDAS Sucks because…My daughter’s personality “pre-PANDAS” has never come back 100% since the onset. We’ve been close, but never 100%. I miss her fearlessness! (K.B.)
PANDAS Sucks because…it took away my daughter’s life. She was left unemployed, broke, and terrified. Doctors diagnosed her as having conversion disorder, leaving no hope of a cure. After 5 long months she finally found an answer and began antibiotic treatment then IVIG. She is now back to work, thankfully. She was denied disability and lives in fear of not being able to work again. Her body and mind were no longer under her control. (S.)
PANDAS Sucks because…There is no “test”! (A.)
PANDAS Sucks because…childhood should not be filled with fear and avoidance. (M.P.)
PANDAS Sucks because…my son’s school treats him like a mentally ill behavior problem instead of the MEDICALLY ill gifted and talented student he really is. (M.P.)
PANDAS Sucks because…it steals your child. (C.W.)
PANDAS Sucks because…it has robbed my son of his childhood, his brain, his body, his talents, his education, his friends, his fun, his laughter, his soul. It has created a darkness in his soul and in our family that no child or parent should EVER have to experience. It has robbed and tortured many lives. (J.B.)
You are encouraged to come to PANDAS Sucks on those days that you want to scream at the sky all the reasons you hate PANDAS. Instead, type those reasons in an email, press send, and see your words posted a few days later for the world to read.* (And hell yeah…you may use profanity, if that helps convey your message better.)
*Initials/Alias at end of quote indicate the comment’s author. Names will not be used.
Read the first installment in this series: “Your Words: PANDAS Sucks Because…(#1)”
Tell us why YOU think PANDAS Sucks. Click here.
Sarah is a PANDAS Mom to an awesome son. 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 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 me for doctor referrals or specific medical advice. This blog/web site is for informational and support purposes only. I am not a doctor.
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