Blynda Killian

Mom/ advocate/ CVS/ Cyclic Vomiting Syndrome Association Board of Director/ caregiver/ Volunteer/ patient family advisor

[Blynda Killian @CVSABlynda]

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..

[McMaster University Department of Pediatrics @MacUPediatrics]

Cyclic vomiting syndrome & cannabinoid hyperemesis syndrome cause sudden, intense nausea & vomiting. Home treatments may help, but ER visits are often needed.

@MacUPediatrics' Robert Issenman calls for more research on better care plans in @NGMJournal. ⬇️
https://t.co/OQLgcwtmgE

[Blynda Killian @CVSABlynda]

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

[CVSA U.S.A. @cvsaonline]

Lots of talk about the PTSD, but he mentions cyclic vomiting syndrome too.

[CVSA U.S.A. @cvsaonline]

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.

[Blynda Killian @CVSABlynda]

@deslilo @cvsaonline Thank you so much for participating in this event!

[Blynda Killian @CVSABlynda]

And this is why I appeal everything!! https://t.co/nhZSbldNnW

[CVSA U.S.A. @cvsaonline]

March 5th is International CVS Awareness day!
Find more information and locations lighting up here: https://t.co/uZHR2blqCc

[Blynda Killian @CVSABlynda]

@RingCentralCare And to update this issue, we still can not even get community support to respond to emails. No chat access, cases submitted have yet to be answered, account manager MIA, phone calls to tech support are unresolved with over an hour on the line.

[Blynda Killian @CVSABlynda]

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.

[Blynda Killian @CVSABlynda]

@RingCentralCare No need for DM to hide issues. This should have been set up way differently to start service. Once you sign on the line, there is no assistance.

[Blynda Killian @CVSABlynda]

@RingCentralCare I have contacted, tech support, onboarding, and my account manager multiple times. It was not disclosed that SMS would require a more than 10 day registration period. And it is disabling for orgs that have 2FA on access to systems. We changed in December and still can’t use.

[Blynda Killian @CVSABlynda]

@childlifeoncall @OnceUponAGene I will give a shout out to @UCSFChildrens hospital for their care of not only kids, but parents and family. They have programs and services that help all of us “live in”parents of the frequent fliers. Awesome place if you are looking to up your patient centric care.

[CVSA U.S.A. @cvsaonline]

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: https://t.co/kLE7olVjof

[Blynda Killian @CVSABlynda]

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

[Blynda Killian @CVSABlynda]

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

[Blynda Killian @CVSABlynda]

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

[Blynda Killian @CVSABlynda]

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

[Blynda Killian @CVSABlynda]

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.

[Blynda Killian @CVSABlynda]

@OnceUponAGene @RareDiseaseDad @fam177a1mamma @kaaldinger @lukebrosen 1.Your condition doesn’t define who you are and what you want to do with your life. 2. There’s no cure. 3. Doctors don’t know everything. They learn just like we do. 3. People can’t relate unless they have been in a similar situation or have a chronic condition themselves.

[Blynda Killian @CVSABlynda]

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

[Blynda Killian @CVSABlynda]

TY to @RepBera ‘s legislative assistant Harsh Patel for meeting w/ @cvsaonline 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. @RareAdvocates @EveryLifeOrg