PANDAS/PANS
​Advocacy & Support

-- S. Marchan-Martinez
I have PANDAS and prior to joining this group I have never interacted with anyone that has had any direct experience with this condition. It's comforting knowing that I'm not alone in dealing with this.
-- J. Trujillo
-- T. Tumminaro

TESTIMONIALS


Hearing positive messages from our friends inspires us all to effect change within the PANDAS/PANS community.

-- M. Maxham
“Carrying the weight of a PANDAS diagnosis can be lonely. I have second guessed myself a million times, stayed up nights with worry or new reading as I search for answers, and crumbled with fear at the first sign of a new flare. Other parents, even well meaning family, do not understand this. In this group, however, I do not have to explain any of this. When I come here for advice or research or support, I do so knowing that we have all lived some version of this lonely life. It's not only informative. But also very comforting.”
This group filled me in on the different doctors available in the area so we could get help from a doctor that had experience with PANDAS and not deal with doctors that still do not believe PANDAS to be a real illness. I was also able to get quick information regarding testing, test results, and courses of treatment so I knew what to expect and what questions to ask
“This group is like a warm hug after being left in the cold. I'm not sure where my daughter would be without the wealth of information I find from this group. I continue to learn something new every day.”
-- V. Sullivan
-- C. Dardis
-- K. B.
I joined this group on the Fourth of July in 2013. My daughter was one month into her PANDAS illness, and I was scared to death. A mother from the group personally called me that evening and talked to me about her son's illness and recovery. It was just what I needed to hear. This group pulled our family through the PANDAS storm. We no longer felt alone in this. The compassion, the hope, and, most of all, the empowerment that comes from this group is irreplaceable. These people give me strength, inspiration, and lots of helpful information. There is a lot of respect for one another here. We all cheer our children on, and we are there for one another during the tough times. Today my daughter is doing great. She has her childhood back. But I always want to be a part of this group. This group has taught my family how to survive PANDAS. Rain or shine, we are going to keep moving forward with hope. I can't thank this group enough.
“This website has been a lifesaver. It is a wealth of fantastic information, advice and great ideas. It has given me an immense source of hope and optimism. I don't feel as helpless and isolated. This website has empowered and given me support, plus I have met some incredible and wonderful parents. I feel hopeful.”
“My son had his first flare a few months ago. Dr. K put him on two weeks of antibiotics and he has been mostly symptom free since. This group has better prepared me for the future and what we could potentially see. I feel like I will be able to speak confidently when and if we have additional flares in the future. Thank you everyone!”
I am in love with [this] group, we have found support here even in our darkest days.
-- A. Stein
-- N. Kroll
-- J. Miller
"Being a very recent member of the group, I can say it delivered a few key things for my wife and I. First and foremost, knowing we are not alone in this struggle. It's beyond huge to know others have gone through it and have a kind word of encouragement. Second, adding the combined experience and knowledge of the group allowed us to get up to speed quickly with what we are dealing with. That knowledge and understanding gained translated into making better decisions on what to do next. More important is the impact that knowledge had on how we interact with our son while he goes through this. Lastly, is references to real help. Doctors, clinics, how to understand test results - the works. Nothing feels more bleak than being in a state of mystery on what to do next. This group wiped that fear away quickly. My thanks out to the many members and staff for the continued work to help. It means the world."
-- J. Gleisner
My daughter was just recently diagnosed. I went to Facebook immediately to see if I could find a group like this. It has been amazing to be able to post a question and I get many responses and advise. I am so thankful you all welcomed me into this group.
-- D. Ozzy
-- J. Pope
The help here stopped my sinking feeling in its tracks and empowered me to seek all sorts of angles in the healing of my son. We are not there yet but doing better and understanding more as each day passes.
Before joining this group, I felt completely alone. I'd try to talk to people about my daughter, but nobody really understood, except for close family or friends who'd seen for themselves the impact PANDAS had on our daughter and entire family. I've also gotten invaluable advice about physicians and treatment options here on this board.
“There is nothing more comforting then being able to reach out to other parents for advocacy & support through the most difficult times of our journey to recovery. Parents who understand & can offer a wealth of information and can come together to form new friendships along the way.”
-- S. Stachnik
This group was the the light I needed during a very dark and scary point in our lives. There is no way for me to express how grateful I have been for the guidance and support! When I am overcome with fear and confusion this is my safe place.
For me, the best part of this group is having a nonjudgmental audience to go to that "gets" it. Until you have walked this walk, people can try to understand but there is always a point where they can not. Having this sounding board to go to to cry, educate, and share victories is priceless.
-- K. Miller
“This group is the first place I came when, after three years being the only one I knew who had a child like mine, someone else in my life said they knew of someone who knew of someone who had a child like mine- and that person was a member of this group. She invited me to join. Here, I was surrounded by others who shared the same experiences, answered my hundreds of questions patiently and knowledgable, held my virtual hand when I couldn't take another second of this illness, and ultimately led me to find recovery for my son. This group has the smartest mothers and advocates I've ever met!”
-- B. Evans