In 2019, CVSA obtained Congressional Recognition of International CVS Awareness Day. See here for more of this year's CVS International Awareness Day: classy.org/campaign/inter…

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Ugh! Changes to my day already. Happy Tuesday!

This is what I am doing today. #advocate

I’m supposed to be prepping for legislative meetings this week. But, it’s mega migraine day 2 and the washing machine sprung a leak. So even tho it hurts to move.. I have to deal with the pulsing pain in my head as I move up and down fixing the machine.

TY to Ami Bera, M.D. ‘s legislative assistant Harsh Patel for meeting w/ CVSA U.S.A. as part of #RareDiseaseWeek to talk about Telehealth Modernization Act, Speeding Therapies Access Today Act and many others that can impact the care patients can receive. RDLA EveryLife Foundation

Day 2 attending #cmsqualcon22 looking for ways to represent and impact changes for patients being stigmatized when seeking emergency care for cyclic vomiting syndrome.

Getting a doctors appointment is tragically difficult 2 do when the reason U need 2 visit is related 2 shortness of breathe & trouble breathing. 👋 I have asthma, but fail the COVID pre questionnaire. 1 horrible forced 9 hour ER visit later & I am avoiding getting medical help.

Ever feel like hurricane force winds impaled your head with a metal fence post wrapped in concrete? Migraines are no joke and not just a headache. #migraineawareness #migraineadvocacy

Day 4 of #migraine and #migrainepain like this ⬇️. My hair hurts, my teeth and jaw are impacted.. today is a good day to share being chronic migraine awareness day. #MHAM2022 #RallyAgainstChronicMigraine

This week my medically traumatized son decided that he needed to go to the ER. Because of his age and gender he was the target of presumed drug abuse and treated as a drug seeker. He was never evaluated for the issue he went in for. #neverstopadvocating

Announcing the 3rd International Symposium on CVS and CHS will be held on November 4-5th. This event is specifically for medical professionals. CME is available. Please share this opportunity to spread awareness and information about CVS. See more here: conta.cc/3RnlAfz

PSA: if you are looking for a phone service for your business or organization, please avoid RingCentral nothing but hassles and still can’t use SMS which we need to be able to use systems we work with for 2FA.

March 5th is International CVS Awareness day! Find more information and locations lighting up here: givebutter.com/CVSAwarenessDa…

And this is why I appeal everything!! propublica.org/article/cigna-…

CVSA heard about GDF15 at the symposium held last year. Great to hear about potential treatments for HG. Hoping that it holds potential for CVS patients and treatment down the road.

Clyde Edward’s-Helaire talks about having PTSD and CVS. Why is the media focusing on PTSD? #CVSAwareness

Cyclic vomiting syndrome & cannabinoid hyperemesis syndrome cause sudden, intense nausea & vomiting. Home treatments may help, but ER visits are often needed. McMaster University Department of Pediatrics' Robert Issenman calls for more research on better care plans in Neurogastro & Motil. ⬇️ pubmed.ncbi.nlm.nih.gov/39155452/

We are approaching an endgame.

I just had a surgical procedure where I was cut open in 3 places, bone removed, tendons spliced, other tendons repaired, bone fusions and more. I was denied post surgical pain medication because my insurance didn’t think I needed it. Now I don’t need anesthesia..