Health Update! May 2024

This is a health update! Covering updates on my iliac dissection, my hepatic pseudo aneurysm, an MCL tear, spironolactone, and Invisalign.
You can find the research update mentioned in this video at thevedsmovement.org/wp-conten...
The views, information or opinions in the blog, podcast, and vlogs are solely those of the individuals involved. The information does not constitute medical or other professional advice or services.

[@sharonmccauley4134]

Thank you for sharing your story.

[@ZijnShayatanica]

I'm so glad you're doing better... You've had a rough few months & it's nice that you're healing & things are slowing down. 💕 The research on Spiro is really cool!! It makes a lot of sense that blocking Androgens would be beneficial for the health of fragile blood vessels. I have Hypermobile EDS & started Testosterone a year ago [Non-EDS reasons lol] & it's done wonders for my joint instability & POTS. I look forward to hearing more about your experience & the research as it develops!!

[@SandrinaN]

Thank you.

[@mariannefung7993]

Katie's in the house! Hey Katie, Happy belated birthday to you. 🎉 Really glad to hear that everything is going so well. Thanks so much for providing these informative (and potentially life saving) videos.

[@shannongreenwell1278]

Sending you lots of gentle hugs and good vibes! From a cEDS zebra 🦓.

[@claystroke9969]

You are so awesome for doing this! I had a SCAD heart attack 2 years ago and was diagnosed with Fibromuscular Dysplaysia... something told me to get a 3rd opinion. I'm seeing this new cardiologist on Thursday for a followup diagnosis which I know will be vEDS. The reason I know is because the guy who did my echocardiogram was really intrigued by my case because he said, of the 38 years of doing echo's(I was his last patient as he was retiring, teaching a student that was taking over his job at that moment), I was his first rare case. He said the cardiologist had me listed as vEDS. I thought that was really interesting too. Just listening to you describe all your symptoms, etc. I got teary eyed knowing, it fits. I hope this cardiologist is the right guy. Regardless, you have an awesome attitude and you bringing awareness to this weird genetic mutation makes life a little less scarier. Thank you! 🙏❤️🙂 And I'm glad you're feeling better!

[@TranslucentOne]

Hey thank you!! 🤗 I hope your appointment on Thursday goes well. There are lots of ways now to get connected with others dealing with VEDS through The VEDS Movement and there are a couple VEDS groups on Facebook too. You’re not alone! Best wishes to you. ❤️

[@lavintella]

Hi Katie! I took spironolacton 21 years ago for an hirsutism issue and I didn't feel any side effects even though I didn't notice any improvement with my hirsutism, this seems to be a pretty safe medicine from what I know. I really hope it is going to help you a lot with vascular issues! I need braces pretty badly but I have severe gums recessions because of past braces and orthognathic surgeries, do you know if invasilign is more gentle for our gums compared to regular braces (I have hEDS)? The surgeon I consulted several years ago for a TMJ replacement surgery (to learn about my options regarding my idiopathic condylar resorption) told me that an orthodontist could use invalign on me, that would be better [for my gums seemingly].

[@TranslucentOne]

Hey! ❤️ I’m not sure if Invisalign is safer for the gums than other orthodontic options, but the periodontist signing off offered me a lot of comfort. Specifically she was looking at the types of movements planned and whether they would stress the gums. I wonder if you could get a periodontist to look at your case and work with an orthodontist?

[@lavintella]

@@TranslucentOne Thank you for your answer Katie! It's a good idea, I need to find a good periodontist and ask him or her a good orthodontist with whom she or he would feel comfortable to work with. A good team is very important to have a smooth treatment plan.