Our VEDS Story (Vascular Ehlers Danlos Syndrome) Knowledge is Power! ♥️🦓
To learn more about VEDS visit
https://thevedsmovement.org/

♥️🙏🏻To Donate: (No donation is too small) ⤵️
https://give.marfan.org/JOY24

Or⤵️

https://give.marfan.org/JAGVEDSWARRIORS

♥️🦓 OUR VEDS STORY ♥️🦓
1 year ago I was rushed to the hospital and almost lost my life due to a Rare Disease called Veds (Vascular Ehlers Danlos Syndrome) It was from that day on our lives changed forever. Me, Adriana and Gianni were all diagnosed with this fatal genetic connective tissue disorder that we’ve never heard of.

Veds is a Rare Connective Tissue Disorder that affects all tissues, arteries, and organs making them extremely fragile. I had suffered 6 Artery Dissections (aka tears), 50% of 1 of my kidney’s died, and I had internal bleeding.
Patients are at a daily risk of spontaneous organ ruptures, heart attacks, aneurisms, and strokes.
Too often, many with VEDS are not diagnosed until after they have had several life-threatening events or, even worse, at autopsy. Some are not diagnosed at all.
Awareness is critical because, currently, 80 percent of people with VEDS have experienced at least one life-threatening event by the age of 40.
It is estimated to affect between 1 in 50,000 and 1 in 200,000 people. With only 8,000 cases worldwide.

💔There is no cure or treatment.

I’m not sharing this for sympathy,
I’m sharing this to raise awareness. I’m sharing this to bring attention to this disorder that is so rare that even local hospitals and doctors have no idea what it is!!
Knowledge is Power!👊🏻
I am lucky to be alive and I will not stop raising awareness for my children, myself and my Veds Community. Not to mention the many others out there that may have Veds and just don’t know it!!! 🙏🏻♥️

Now it’s time to fight this, raise awareness, save lives and improve the quality of life of individuals with VEDS. By pursuing the most innovative research, educating the medical community, local hospitals, schools, general public and affected individuals, and providing support to patients, families, and caregivers, we can charge forward and improve the outcomes for those living with VEDS.

To learn more visit https://thevedsmovement.org/

🚶🚶‍♀️Here is the info on the WALK TO VICTORY on June 1st 2024 if anyone would like to join us..if not you can donate to help continue to raise awareness and find a cure or treatment. No donation is too small. We thank you from the bottom of our hearts! ♥️

Please share!!! Love you all! 🙏🏻♥️

https://give.marfan.org/JOY24

https://give.marfan.org/JAGVEDSWARRIORS


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