Dear Ellen,

Though I’m sure that you’ve heard of POTS by now, a quick search on your website only brought up “pots and pans” which is not exactly the sort of pots I’m writing to you about. Please accept my apologies in advance for the length of this letter. There’s just too much to say and I believe you will find this important too.
What is POTS?

POTS stands for postural orthostatic tachycardia syndrome. Don’t feel bad if you can’t pronounce it. It took my daughter and I an hour of parrot-like repetition before we could say it without stumbling over the syllables. It’s not a cooking tool, a weed to legalize, or something to put flowers in. It is a rare, unknown illness that is more common than MS and ALS combined.

Ready for another crazy word? POTS is a dysautonomia which simply means a dysfunction of the autonomic nervous system, the system that does all those automatic things that you don’t think about like regulating your blood pressure, heart rate, body temperature, digestion, and more. So basically, POTS patients have a myriad of debilitating symptoms that are caused when their system just stops working. Their heart rates race, their blood pressure drops, they can be dizzy 24/7, they faint, they’re exhausted, and they get brain fog (watch a AP Calculus student forget how to add and you’ll know what brain fog is). Currently POTS remains without a cause and without a cure, yet affects 1-3 million people in the US, mostly teens and 85% female.

You can read more here:
http://blog.crowdmed.com/pots-the-most-common-medical-condition-you-never-heard-of/
http://lookingforlukah.us/2015/03/11/24-things-i-want-new-pots-moms-to-know/

http://www.standinguptopots.org

My story (which is my daughter’s story too).

The crazy thing is that POTS often comes out of nowhere. My healthy, athletic, honors student got tonsillitis, had a tonsillectomy, and just never recovered. Her health declined. She started falling. She got migraines that would last a week at a time. She missed so much school they started sending a teacher to our house to help make up days, and then one morning, she woke up so dizzy she couldn’t even walk.

For 18 months she was dizzy 24/7 even when she was lying down. She spent most of her junior and senior years of high school on home hospital unable to attend school, to participate in extra curricular activities, to form a social life (she’d just moved and knew no one), and ultimately, unable to earn the financial aid/scholarships awards that she’d have earned if her life had been “normal.”

We were lucky because it only took 4 months to find a diagnosis, only 4 months of doctors telling us that it was in her head and that I “needed to have a ‘come to Jesus’ meeting with her because she must not want to go to school.” Specialists questioned her and me. Someone even blamed me. “It’s because you’re too close.”

For 18 months we were linked. She scaled walls to get around the house. She linked her arm in mine when we went out. I led her everywhere. Her favorite outing was to the grocery store because she could walk on her own  while pushing the shopping cart.

POTS tried to derail my daughter. It stole high school from her, stole opportunities, activities, friendships, all those wonderful extra-curriculars to put on her college resume. She missed out on scholarships. She has a disability, but there’s no help for POTS kids.

It’s been just over three years since her diagnosis and I’m thrilled to tell you that she’s living 2000 miles away at Oregon State University attending full-time and studying microbiology. She’s still “Potsie,” but she’s strong, working hard, and doing everything in her power to keep her illness under control.

She’s controlling it; it’s not controlling her.

We’ve had so many moments. She’s had too many heroic moments – too many for this, but know that my daughter and so many others are unknown heroes in the quiet of their homes, struggling to find normal.

My dream.

It’s invisible. POTS kids look normal, so people don’t see the hurt. They don’t understand it, so sometimes they just can’t believe it. POTS kids are fighters, but they feel alone. They wonder who’s fighting for them and why people don’t seem to care?

1. I seek awareness not only in the general public but in the medical community. Awareness generates interest which can generate support for research that will find common causes and cures.
Knowing the struggle that kids and parents go through, I want to reach out to them with encouragement and support. A mom on a POTS forum said her son asked her, “Why doesn’t our family care about me?”  It’s too common a problem. I’d like to show that someone cares. I’d like to begin with packages specially created for teens with POTS and their caregivers full of goodies that they will enjoy and letters of encouragement.
Eventually, I’d like to create a scholarship program for POTS kids like mine who missed too much school to compete. POTS is a hardship enough and it takes great resilience for these kids to attend college full time. That’s an accomplishment in and of itself. Adding the financial burden and need to work puts additional unhealthy stress on this kids at a time when they just really need encouragement and support.

2. Knowing the struggle that kids and parents go through, I want to reach out to them with encouragement and support. A mom on a POTS forum said her son asked her, “Why doesn’t our family care about me?”  It’s too common a problem. I’d like to show that someone cares. I’d like to begin with packages specially created for teens with POTS and their caregivers full of goodies that they will enjoy and letters of encouragement.
Eventually, I’d like to create a scholarship program for POTS kids like mine who missed too much school to compete. POTS is a hardship enough and it takes great resilience for these kids to attend college full time. That’s an accomplishment in and of itself. Adding the financial burden and need to work puts additional unhealthy stress on this kids at a time when they just really need encouragement and support.

3. Eventually, I’d like to create a scholarship program for POTS kids like mine who missed too much school to compete. POTS is a hardship enough and it takes great resilience for these kids to attend college full time. That’s an accomplishment in and of itself. Adding the financial burden and need to work puts additional unhealthy stress on this kids at a time when they just really need encouragement and support.

 

Please help.

Asking for help isn’t something I’m comfortable with, but I’m asking you now not because you’re a celebrity, but because you have shown, through your show, that you care. We’re lucky in comparison to so many others. Some have worse symptoms, others waited years for a diagnosis. They all need encouragement and a sense of community knowing that they’re not alone and that there are people who care and who are working together to find a cure.

If you could dedicate just a small portion of a segment of your show to POTS awareness, that would be fantastic! We need awareness among the population including the medical community.  Many kids can’t get a proper diagnosis because not enough doctors are aware of the condition. There are so many phenomenal kids and terrific examples of resilience that you could fill an entire audience with them.  If you want to talk to some truly knowledgable doctors, we saw Dr. Abdallah of the Children’s Heart Institute in Virginia who is excellent, but Dr. Rowe at Johns Hopkins University is also one of the leading doctors in this community.

Thank you (and your staff) for taking the time to read this and for your consideration.

 

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