Kit Caren

26/05/2025

I always had a feeling that you weren’t going to be around long. I just didn’t expect for it to end the way it did. I forgot to say good night the night before Memorial Day 2000 and I don’t know why. It was routine for me to go into your room before bed where I always knew you would be asleep. I would lean over, kiss your cheek and tell you that I loved you.

Instead I just went straight to bed, woke up in the middle of the night and heard you and dad talking- but no idea what you were saying. Then went to sleep again not knowing my life would never be the same. I was awoken by my sister around 11am… with worry in her voice, “mom’s not home yet”. I knew as soon as she said that, that you were gone. It was supposed to be a quick errand and here it was, 4 hours later. I am glad I was asleep.

Memorial Day of the year 2000, at the end of my freshman year of high school. The cops came to our door and let us know you were dead. Your body was found at the bottom of a parking deck. An apparent su***de.

I knew you had been acting depressed. Anyone would have. You had been in Virginia two months prior testifying in front of the FDA and the next month we were in Las Vegas on the news. In between that time you found out the FDA panel had been instructed not to listen to the women’s testimonies about their experiences with breast implants. The more that have come to learn the past few years, I just don’t know. I do know I will never get the complete answer.

26/05/2025

The night before Memorial Day 2000, I forgot to say goodnight and it was the worst mistake I ever made.

20/05/2025

So sad! RIP ❤️

BREAKING: George Wendt, the actor best known for playing Norm Peterson on the long-running sitcom "Cheers," has died. He was 76.

Read more: https://abcnews.visitlink.me/hYS9ym

14/05/2025

They wanted to use silicone in vaccines as a booster a long time ago. I wonder if people know that needles are coated with silicone, so they slide into the vein easier. Silicone is everywhere and we need to find something safer!

https://www.nytimes.com/1992/01/18/us/strange-history-of-silicone-held-many-warning-signs.html?fbclid=IwZXh0bgNhZW0CMTEAAR6yatZV0iqmo4EInX8F77nN0oHKiEAtFRX5R6wbrsgU_t3EIwDaHLtPc01eVQ_aem_DB8-Y1c14ogLpWOoDws3WA

AdvertisementSKIP ADVERTISEMENTSupported bySKIP ADVERTISEMENTStrange History of Silicone Held Many Warning SignsShare full articleBy Philip J. HiltsJan. 18, 1992Credit...The New York Times ArchivesSee the article in its original context from January 18, 1992, Section 1, Page 1Buy ReprintsView on tim...

29/04/2025

I was 6 when I started developing weird symptoms. It took 7 years to get my first rare disease diagnosis.
Today we celebrate those who are on this journey and wish them the best of luck finding answers.

It’s ! 🧩💙

For many living with a rare disease, the path to answers can take 5 years or longer. Limited access to specialists, high costs, and gaps in available information can make getting a diagnosis feel impossible.

But even without a name, your story and your health matter and you are not alone.

NORD is proud to provide resources and support for undiagnosed and misdiagnosed patients and caregivers navigating this difficult journey. We aim to help you find the answers and care you deserve, sooner.

Learn more and explore helpful tools here: https://bit.ly/4iAFiC3

Follow along throughout the day as we share Undiagnosed Day stories! If you have your own, post about it and tag NORD so we can shine a light on your experience.

25/04/2025

30 years… I guess baby steps are better than being stagnant. I wonder where we would be if they actually investigated?

24/04/2025

Excuse me RFK Jr.,
We need a children’s registry for women with breasts implants to track their health. Not an autism registry.

This is an excerpt from an affidavit by Dr. Douglas Shanklin in 1999. Kids are still getting sick, Im 40 and still sick.

Xoxo
Kit

Please share this if you see It. We need help.

https://www.researchgate.net/profile/Douglas-Shanklin

24/04/2025

Exercise is an important part of managing POTS, but aggressive one-size fits all approaches don't work for everyone. A new systemic review article co-authored by several Dysautonomia International board members and other experts found that, of the seven exercise clinical trials in POTS, Improvements in heart rate were reported across all studies, while stroke volume and quality of life improvements were also found.

Notably, all but one of the prior POTS exercise studies was determined to have a moderate to high risk of bias, meaning the patients in the studies may not be fully representative of the whole patient community. For example, some of the studies excluded people who had EDS, but 1/3 of POTS patients have EDS.

Importantly, the authors also note that "many patients report quickly reverting to more symptomatic POTS if they stop engaging in regular aerobic exercise even for a few days" and that POTS flares "triggered by infections, concussions, pregnancy, surgeries, accidents/bodily injuries, vaccinations, periods of extreme emotional stress, and other events, including over-exercise" can result in a worsening of POTS symptoms or a patient no longer responding to their previously effective exercise regimen - phenomenons well-known to the patient community, but not previously recognized in the medical literature.

The authors note that, while exercise remains an important part of POTS treatment, future exercise research in POTS should include larger numbers of diverse patients followed for longer periods of time, and that co-morbidities that may influence exercise outcomes should be identified prior to enrollment and tracked as an outcome measure. They also suggest that future trials should focus more on the functional activities of daily living (a recognition that a lower heart rate on standing doesn't necessarily mean the patient is feeling and functioning better).

You can read the article at https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2025.1567708/full

Much appreciation to all of the doctors and physical therapists who donated months of their time and talents to perform this systemic review and write it up, and to all of the patients who volunteered for these clinical trials!

24/04/2025

Compounded meds are expensive. That is all.
💊💊=💵💵💵

22/04/2025

Should I feel bad for breaking up with my doctor and ghosting him? 😂