Connect Issues Winter 2022

IT DOESN’T GET BETTER, BUT YOU GET BETTER AT LIVING WITH IT

Although he didn’t know it at the time, the death of Otto Nitschmann’s father in 1991 from a brain aneurysm would have a lasting impact on his life and consume his adulthood. Otto was only four when his father passed away, and his family never knew why. Otto was born in El Paso, TX, and lived there for two years until his parents moved back to Chihuahua City, Mexico. When he was 14, his mother headed back to Texas so he could receive an American education. Otto went to high school and college in El Paso, and in 2011, moved to Chicago for an engineering job. While driving on a work trip in California in 2016, he began feeling ill and stopped at a gas station. “I could feel something rupture inside of me,” Otto stated. “It was the worst pain I had ever felt in my life - like claws were digging in my stomach.” Over the span of three weeks, doctors found a rup- tured aneurysm on his splenic artery as well as others in his intestines, so his spleen and part of his intestines were removed. He left the hospital, not knowing the cause. “Even though we didn’t know what was causing all this, as soon as we heard aneurysm, we knew it had to be related to dad,” Otto said. When he got back to Chicago, Otto saw many doc- tors in search of answers. Finally, he had a genetic test which confirmed the diagnosis of Vascular Ehlers-Dan- los syndrome (VEDS). “My fiancé and I knew it was a serious condition and the limitations it would have on my life,” said Otto. “The hardest part was learning about life expectancy. I told her she deserved a full husband, a full life.” But Catalina was committed to Otto and they were married in 2018. Otto, who is the same age as his father when he passed, contemplates what the future may hold. “You think about death all the time,” he explained. “Should I save for retirement? Will I ever see retire- ment? It’s tough, but a therapist helps.”

p Otto and Catalina enjoy spending time traveling together.

In addition to a therapist, Otto said he finds comfort and answers in the monthly virtual support groups of- fered by The VEDS Movement. He also has great hope because of the upcoming clinical trials for a potential treatment for VEDS. “Whenever a new member comes in and has a recent diagnosis, you can tell they are going through the same stages,” stated Otto. “You help them, but many times, they also help you. It’s good talking to someone who understands you.” Otto encourages others to find support and mental health help to quell the negative thoughts and look toward the future. “It doesn’t get better, but you get better at living with it,” he said. “Don’t give up on your quality of life. You need to stay healthy for others, but you also want to live life for yourself because you don’t know how long you have. Finding a balance is key.” Spanish Language Summit January 22, 2022 ONLINE The Marfan Foundation will hold its first-ever Spanish language summit on January 22, 2022. Speakers from all over the world will provide information on Marfan, Loeys- Dietz, and VEDS for people a ff ected with these conditions and their families. A panel of people with these conditions, including Otto, will share their experiences and how they live successfully with their condition. Registration is free, but required. Visit Marfan.org/cumbre-de-la-fundacion- marfan to learn more and register.

The VEDS Movement is looking forward to the upcoming clinical trials for VEDS planned by Acer Therapeutics (celipr- olol) and Aytu BioPharma (enzastaurin). We will provide up- dates on both trials as more information is announced. You can sign up for updates from The VEDS Movement on our website, TheVEDSMovement.org . You can also get updates directly from Aytu BioPharma at PreventVedstrial.com and from Acer Therapeutics at DiscoverCeliprolol.com.

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Marfan.org