Clare - "Living with vascular Ehlers-Danlos syndrome (vEDS)."
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- Опубліковано 12 вер 2024
- Clare Stacey has vascular Ehlers-Danlos syndrome (vEDS) and shares her experiences for the Genetically Defined EDS: Strategies & Solutions for Unmet Needs Hybrid Meeting.
vEDS is a genetic connective tissue disorder that causes the blood vessels and organs to be fragile and prone to tearing. The complications of vEDS can be life-threatening and include aneurysm, dissection, and rupture of the arteries and rupture of organs. vEDS may also cause a variety of other symptoms, including extensive bruising and spontaneous pneumothorax.
"I am 43 years old, a retired Occupational Therapist, and a rare disease advocate.
Multiple vascular complications have provided me with a lived experience of the potential pitfalls in the diagnosis and management of vascular Ehlers-Danlos syndrome (vEDS) complications. The condition is frequently misunderstood and underestimated, resulting in a very traumatic patient experience.
However, the lack of understanding of the disease process leaves BOTH patients and clinicians vulnerable. I feel a responsibility not only towards other patients and their families but also towards medical professionals.
I strongly believe that better collaboration and education between patients and clinicians can improve health outcomes. I hope that my presentation highlights some of the challenges and potential areas for development."
It is sad to see that even with such a serious illness medical professionals are not taking you seriously.
This was really good, thank you. You made excellent points and it’s hard as a patient with vEDS, when you’re in pain in the hospital and you STILL need to be the one advocating for yourself. Hard stuff. I hope the right people see your message! ❤
Thank you for sharing your journey. I a male, 40 years old that been competitive in sports until recently just got diagnosed with vEDS after having multiple mini-strokes the last months. I had ambulance personal, nurses and even doctors rolling their eyes over me and I don't even know if will call ambulance next time. At least the diagnose have given me some confidence back. I am far from being hypochondriac, but my mental issues and my anti-depression cure have not really helped convincing emergency rooms that..
I wish you all the best!
Very comprehensive, thank you for this video. All the best.
Yes inwish all the best❤❤❤
Thank you for sharing I alsohave veds. Ive had 11 stomach surgeries, 12 bowel blockages. 2001 , 75% of my intestines were outside my abdominal wall my stomach and my diaphragm dissected from the original positions I ended up having to have emergency hernia surgeries. All of these surgeries care about because of gallbladder surgery.My gall bladder just went ad. Now i havec4 lsrge hernias , and i now have uterine cancer. Now neither one of the doctors will do surgery on me because of cancer
Or call you a hypochondriac for… 42 yrs??
vEDS is a monster