Why PANS Awareness Saves Lives

October 9th is International PANDAS/PANS Awareness Day!

For the last eleven years of my life, I’ve battled a debilitating yet misunderstood autoimmune disease called PANS. It’s a disorder where an infection or an environmental trigger confuses your immune system into attacking your brain. This leads to all sorts of problems like OCD, anxiety, depression, tics, involuntary movements, cognitive problems, and many more horrible things.  It affects at least 1 in 200 people, but you’ve probably never heard of it.  Many doctors haven’t, either.

Although PANS symptoms can consume your entire day, the worst part is that the disease feels like it steals your very self from you, because it changes your whole personality. It’s affected every aspect of my life, physically, emotionally, mentally, socially, and spiritually.

I tell my story not because it’s exceptional, but because it’s too common…

When I was eleven, PANS turned my life upside down.  I developed a mysterious illness (probably Lyme Disease or Rheumatic Fever) that seemed to go away on its own, but a few months later, I woke up as a different person with severe OCD and ADHD.  I was never the same after that.

For the next eight years, I went from doctor to doctor trying to figure out what was wrong with me, as I had many strange symptoms and mental illnesses that seemed to come and go. Some of the diagnoses I accrued included OCD, Depression, Anxiety, Anorexia, ADHD, a tic disorder, and even Narcolepsy.

Just as it seemed like my problems were going away, my health began to deteriorate over the course of my freshman year of college. When I caught mono that spring, it triggered the worst PANS episode of my life, changing me from a highly motivated student full of dreams and aspirations, to a tormented being that couldn’t bear the thought of living another day. I suddenly developed wild involuntary movements all over my body. I couldn’t walk. I stopped eating, and I threatened to kill myself. Over a couple of weeks, I lost my mind.

Finally, I was diagnosed with PANS at nineteen, in 2014. I had two high-dose IVIG treatments in the months that followed, over a year of antibiotics and steroids, a tonsillectomy, and some therapy for what was left of my OCD, and I beat this disease into remission at the end of 2015. Unfortunately, I caught Lyme Disease a few months later, and I’ve not been able to come back from that.

At twenty-two years old now, instead of searching for jobs, I’m searching for treatment options. Instead of finding a lifelong partner or having a relationship, I’m just hoping I can find a doctor who can heal me. Instead of dreaming about where I’d like to live someday, I’m coming to terms with my imminent move back to my parents’ house once I graduate college.

I’m a straight-A student, full of promise in my field, making a name for myself, but I’m about to disappear and spend a year simply trying to get better. This is not where I wanted to be, or where I should be, at this point in my life.

What could’ve been if I were diagnosed eleven years ago?

What if my many doctors had known about PANS?  What if I’d been given a simple antibiotic (the standard first-line treatment for PANS) when I initially became sick? Would I have spent my whole adolescence struggling with mental illness and learning challenges?  Would I still be fighting this disease today?  What life could I have had right now?

But then I realize I’m fortunate… Without a diagnosis and treatment, I could’ve spent the rest of my life with debilitating mental illness, and I never would’ve finished college, as I will in December—I may not have even seen my twentieth birthday. I’ve defied all odds, and the doctors who said I would never get better, and I have a much higher quality of life than I could’ve without treatment.

Despite my illness, I’m still accomplishing my dreams and doing things I never could’ve imagined when I’d hit rock-bottom. Even though I’m struggling right now, thanks to my diagnosis and treatments, I’m one of the lucky ones, because I know I will recover eventually.

My story will have a happy ending… Most like mine may not. We must change this.

Unfortunately, there are over 300,000 children and teens in America alone that suffer from this terrible disease, and most of them will never get a diagnosis. Most doctors remain devastatingly ignorant of this condition, misdiagnosing its sufferers with a plethora of problems, medicating them with psychotropic drugs indefinitely, and even sending them off to institutions. And yes, some people die from this disease due to suicide or the consequences of the eating disorders or impulsiveness that it causes.

With treatment, PANS can be cured. My heart breaks for every person who is needlessly subjected to a lifetime of mental illness—or who will not survive to have any life at all—due to the lack of knowledge among doctors and the public. This could’ve been me.

Moreover, for those fortunate enough to be diagnosed, treatments like IVIG and plasmapheresis are often not covered by insurance. My family could afford what insurance didn’t cover (though we are still battling to get fully reimbursed), but too many children will go without treatment because their family cannot pay for it. In different circumstances, this too, could’ve been me.

I can’t change my past, and I can’t cure PANS, but I believe that if those of us who have been diagnosed and/or educated about PANS continue to raise awareness, we will change the outcome of countless lives. We will yet rewrite these stories, because we have the power to change what still could be.

Awareness can save lives!

Today, October 9th is International PANS/PANDAS Awareness Day. Will you join me on this quest to save lives through awareness? Will you take a moment to share this post? I, and anyone else stricken with this disorder, will be eternally grateful if as a result, even one person gets the help they need.

At least 1 in 200 kids have PANS… It is a treatable autoimmune disorder.  Recovery is possible if treated early and appropriately.

For more information on PANS/PANDAS, please visit:

http://pandasnetwork.org

https://www.pandasppn.org/what-are-pans-pandas/

http://www.nepans.org/websitesstudiesnews.html

8 thoughts on “Why PANS Awareness Saves Lives

  1. We received the state of Delaware’s PANDAS Awareness Day proclamation and a denial letter from aetna from our representative at the same time. It was a very high and very low emotional moment. This post lifted my spirits reminding me of the importance of that proclamation.

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    1. I’m glad this lifted your spirits! I really believe that if we keep raising awareness, insurance companies won’t be able to deny care for PANS any more than for other chronic diseases. I hope you can get a repeal–I think my parents have filed multiple times, but after two years, we finally got a check in the mail. Thanks for commenting!

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  2. I know my daughter has it and when she was 19 yrs old I tried to get her in to get diagnosed and possibly treated through the Univesity of South Florida. They had told me they treat it, we set an appt up, had all of her medical records transferred, then a day before the appt they called to cancel explaining they do not treat PANS and they had no one to refer her to. Sge has never been diagnosed, never treated. She is now 20. She has High Functioning Autism and Pervasive Developmental Delay, NOS andI know of others in out local area who also have kids on the autism spectrum who’s parents also believe their kids have PANS or PANDAS but no Dr in our area to treat unless you go the Biomedical-Self pay route. I don’t understand the reason for USF not taking my daughter or saying “they don’t treat it”. I had Chronic Lyme Disease while pregnant with her and she was a veey sick baby/toddler who has not only had strep and whooping cough, but had Mycoplasma Pneumonia “6” TIMES from 9 mos to age 3! Tragic!!!!

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    1. Hi Joni, I’m so sorry to hear of these terrible hardships your daughter has endured. My local hospital, allegedly one of the “best” in the nation, refused to treat me for PANS, too. This is truly tragic. I hope someday soon doctors will realize that this isn’t controversial–the science is there.

      You’ve probably already seen this, but pandasnetwork.org has a list of PANS experts. I had to go out of state to one of them.

      I hope that your daughter can find some relief soon. You all are not alone!

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  3. Dear DP,
    I am so grateful for you, your life, and your writing.

    Your past two updates (the other on the shame of P/P) have really moved me. Probably all would, but things have been hectic for several months, so now I’m reading your writing again.

    Your writing (and your life within your words): absolutely astounding. More than I can say right now.

    I want to forward your letters because it won’t be me pleading for understanding/believing my words, but an entirely independent–& FIRST PERSON report (from a young precious person at that). There’s not only too low awareness, but also too many disbelievers.

    DP, you’re on a mission…I love you and love the huge gift of your writing and your living through your experiences, and sharing them with us, who are also, with God, making it through. And maybe your words will reach those who just have no idea…or won’t believe. (In a way, I understand wanting to believe this illness isn’t real, but haven’t that option.)

    My daughter & I may look like we’re not doing well…but those who’ve walked with us for our own eleven years of P/P… know we have come UP a very long way. Gratefully, Miraculously, Courageously. More to come.

    God bless you, deep down & way up, too, gifted one!

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    1. Wow, thank you so much for such a kind and thoughtful comment. It means so much to know that my posts have moved you. I never thought my words would reach so many people and resonate so strongly with so many, but I’m forever grateful for everyone who has reached out and given me kind words and encouragement along the way––you included! It’s such a lonely, isolating illness, so I feel that it’s a privilege to be able to shine a light and perhaps bring hope and awareness through my words.

      I’m glad to hear from you again! I hope things will keep getting better for you all. Thanks again for this lovely comment. 🙂

      Liked by 1 person

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