About Us
My Story
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After decades of pain and other symptoms, I was diagnosed with Pelvic Congestion Syndrome and Abdominal Vascular Compressions in 2019/ 2020. Realizing the lack of information and research available on these conditions, I was intrigued to learn as much as I could about these syndromes and my conditions. I spent 3 years studying anatomy, physiology, biochemistry and other clinical subjects, as well as investigating comorbid conditions, reading as many published papers as I could, and participating in conferences. I wanted explanations for my many symptoms, and that led me to study several different medical domains. This was all for my own interest, and to help me find the answers that no one seemed to have.
Mission
As an Engineer with an extremely curious mind, I like to look at the body as a whole. I am interested in the system response as much as I want to understand the underlying microscopic one. Being an outsider to the medical community, I am not limited by medical speciality, I read across scientific domains. I have the ability to look for links across clinical disciplines, but still understand the need for scientific rigour, and overall physical logic.
Finally, as a sufferer of Vascular Compression Syndromes and some of their comorbid conditions myself, I bring the understanding of what it means to deal with them on a daily basis, and the challenges that they, and the current standard of care present.
Vision
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My focus is to increase awareness and research with the ultimate goal of getting more answers and thus better treatment for all my fellow compression warriors. Ideally I want to encourage more research in Vascular Compression Syndromes and their comorbidities through stimulating cross-speciality collaboration and partnerships.
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The VCS patient community has been a great source of inspiration, support and knowledge. Patient input is a neglected part of rare disease research. My goal for future research projects is to include the patient community and their participation is extremely important to me.
We know the suffering
I know the pain and suffering these symptoms can cause. That is why I am striving for answers.
The choice to use non-explicit images and illustrations on this site is mine and mine alone, and does not in anyway minimize the seriousness and severity of these conditions.
