Connect Issues Winter 2021

LIVING POSITIVELY By Liz Gardner, VEDS Community Member A year ago, I was working as a social worker at a job I loved, living with friends, and driving. I had a diagnosis of fibromuscular dysplasia due to beads of aneurysms in my legs, but otherwise, my life was normal. That all changed when I was diagnosed with Vascular Ehlers-Danlos Syndrome (VEDS) in September 2019. It started with two weeks of severe neck pain, which was treated as ear infections. One day, I was playing with my younger cousin at home and, by the next day. I knew I needed to get help. I could not move my neck and it had developed a lump. The hospital initially diagnosed it as a salivary gland infection. My mom, Donna, was unconvinced and insisted I be transferred to Massachusetts General Hospital (MGH) after I had a small seizure. At MGH, they discovered that the fluid was not caused by an infection, but I actually had a subclavian artery dissection. In the operating room for this dissection, they also discovered I had a vertebral artery dissection, as well as a large bleed in my chest that required a chest tube. I had suffered a pulmonary embolism in my right lung, and an ultrasound discovered a hematoma. I was intubated for half of the week, and additional scans revealed I had had a variety of strokes. I was discharged from MGH in October with a suspected diagnosis of VEDS, which was later confirmed through

p Liz Gardner (center), and her moms, Cathy Griffith (left) and Donna Gardner (right).

genetic testing. I only have patchy memories of what happened the first few days in the hospital, and I am really grateful that my moms, Cathy and Donna, were such great advocates for me during this event. Overall, I spent three weeks in the hospital, and then two weeks in rehab. All of this happened a month before my 29 th birthday. My life has changed a lot since last year. After additional strokes and injuries, I lost right-side peripheral vision and gained partial paralysis of my left hand. I moved back in with my parents. I can no longer work or drive. However, I have learned I am a fighter. Since all of this has happened, I have grown closer to my family than I ever have been before. I have found other hobbies I enjoy. I am learning to bake and enjoy doing crafts. I am also walking every day. Although my life has changed, I can say I am okay with that because of the positive things in my life.

Timo Söderlund FIRST INTERNATIONAL ADVISOR ADDED TO FOUNDATION BOARD In November, the Foundation’s Board of Directors named Timo Söderlund, of Sweden, as a Board Advisor. Timo, who is the founder of Aortic Disease Awareness Day and Think Tank Aorta, is the first international representative to serve in a Board position. “Timo is a long-time patient advocate who has been a driving force in aortic disease awareness and patient and medical education around the world. He has leveraged his

business acumen, marketing skills, and networking prowess to connect with the medical community and patient community worldwide,” said Cory Eaves, Chair of the Foundation’s Board of Directors. “We look forward to collaborating with Timo as we further expand the reach of our programs and services and create greater connections with the global community.” Timo, an aortic dissection survivor, began his efforts shortly after his recovery when he was seeking other aortic dissection survivors for conversation and connection. Eventually, one of his children was also diagnosed with the same underlying condition that he has – bicuspid aortic valve. Timo is looking forward to helping the Foundation advance its international efforts. “Organizations like The Marfan Foundation are essential in promoting continued research and sharing the findings of research globally. By making information available to more medical professionals who diagnose and treat people with familial aortic diseases, we can help more families around the world,” he said. Visit Marfan.org for a full list of the Foundation’s Board of Directors and Board Advisors.

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Marfan.org