Connect Issues Fall 2021

LIVING WELL WITHIN THE RULES

Bridgette Howe is also hopeful. “I know that VEDS will be a part of each and every day of my life from here on out, but at the same time, I'm really hopeful with the progress that I see being made and how far we've come as a VEDS community,” she said. “Eleven years ago, when I was diagnosed, I felt so alone, that this was not on anyone's radar. And I look and see how much information is out there now and I'm just really hopeful that, in my lifetime, we will have a cure, a medication, something that will give us our power back.” “I am forty two years into my diagnosis,” said Kristi Posival. “During that time I have experienced what felt like sprinting across quicksand, walking across hot coals, some of the most intense pain over and over again. So many skin tears,

Over the years, Rebecca Matte of Delray Beach, Florida, has been told she isn’t typical of people with Loeys-Dietz. Some doctors told her she didn’t look the part. Others told her she had Marfan syndrome. “Typical or not, it doesn’t take away from my experi- ence of having Loeys-Dietz syndrome,” said Rebecca. From her own medical

needs, like being born with a cleft palate, to her father’s heart surgery and suspect- ed Marfan syndrome, connective tissue conditions were a part of Rebecca’s life from the beginning. After Rebecca's father passed away following heart surgery, many things changed. One major change was that, at age 13, Rebecca was given a Marfan syndrome diagnosis. She stopped playing basketball and took up piano instead. She learned the rules of what she could and couldn’t do to protect her health. “Even though I played by those rules,” she said, “I had my first aortic aneurysm and needed surgery in 2000.” In 2009, some of those rules changed again when Rebecca was re-diagnosed with Loeys-Dietz syndrome. Since she had already made many lifestyle changes as a teenager, the new diagnosis meant that regular MRIs had to go from pelvis to head, but, she said, the rest of the rules still applied. There have been more check-ups and more surgeries, more scary moments and more beautiful ones in the years since Rebecca’s diagnosis, all which are fairly normal for life with LDS. And whether she’s typical of people with LDS or not, Rebecca has been busy living a full life within the rules of her condition. “A few things I have learned is that while I might have physical limits, I still can experience the sweetness and beauty of life,” said Rebecca. “I have gone on rafting trips and long hikes; played lots of board games with my friends; and experienced as much as possible. It’s not about how fast it gets done but that I experience it. I am thankful that because of Loeys-Dietz syndrome, I have become an advocate for my body and my journey.” p “I have become an advocate for my body and my journey,” said Rebecca.

stitches, and busted veins, complemented by amazing highs: a non- stop search for the human spirit, travels around the globe, and marrying the love of my life. However, in all that time I never considered the possibility

p Kristi Posival

that a pill could somehow magically make my vascular system less fragile. The entire concept is mind blowing. Within weeks of the first drug trial announcement from Aytu BioPharma, Acer Therapeutics announced their trial. I guess when it rains it pours! I realize we are still a long way off from actually getting FDA approval and a brighter future for the younger generations with VEDS, but I am pretty excited!” The VEDS Movement will provide updates on both trials as more information is announced, and we will assist in enrollment efforts where necessary to ensure both trials have enough individuals enrolled to provide clear answers for our community. We are inspired by the hope this brings our community and are excited to assist in every way we can. You can sign up for updates from The VEDS Movement on our website, TheVEDSMovement.org .

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Fall 2021