Connective Issues Fall 2018

CREATING CONNECTIONS

MAKING A MARFAN CONNECTION… AND FINDING LOVE

THREE WAYS TO CONNECT WITH COMMUNITY

Lonn Lorenz grew up in Wisconsin as the youngest of nine children, six of whom inherited Marfan syndrome from their father. Even though his father passed away during heart surgery when Lonn was 6, the family did not know about Marfan syndrome until Lonn was 14. He was, and still is, the most classi- cally affected in his family and has had the most surgeries. Despite having family support, Lonn— during his college years—wanted to find people his own age who had Marfan syndrome. As this was 1988, way before the internet, one of his sisters encour- aged him to write a “penpal letter” to The Marfan Foundation, and he did. Across the country, in Maryland, Linda was used to having penpals in other parts of the country. Diagnosed with Marfan at the age of five (she also inherited it from her dad), Linda saw Lonn’s penpal letter in Connective Is- sues . She was one of three people who wrote to him. Linda and Lonn discovered they were close in age and, through their letters, they hit it off. They didn’t meet in person until four years later when Lonn travelled to Maryland for medical care. He stayed with Linda and her parents multiple times when he visited for medical reasons. Although they were both dating other people, their friend- ship grew stronger. Everything changed in 1999. They had a “long and memorable” conversation on the phone and realized they had such a strong foundation of friendship that they should try taking the next step. After a six-month cross-country relationship, Linda moved to California where Lonn was entrenched in a job in Silicon Valley. They were married on June 21, 2001, just four days before her aortic surgery. “Even from the beginning, there was

The Marfan Foundation offers several ways for you to connect with other people who are dealing with the same medical issues you are. This is helpful whether you are newly diagnosed, facing surgery, or want to discuss challenges you or your child are facing. Connect is the Foundation’s own social media platform. You can create a profile, post photos, and participate in groups that are of interest to you, for example, based on a particular medical challenge or geographic location. Go to marfan.org and click on Connect on the bottom of the home page to get started. The Foundation’s Facebook page is another way to meet people with the same diagnosis. People in many locations in the country have also set up Facebook groups where people who are local can meet online. The Foundation also offers a mentor program which gives indi- viduals of any age an opportunity to connect with another person who has faced the same situation they have on their journey with Marfan syndrome or a related condition. It is a great opportunity for people to learn and get support from others in the community. To get a mentor or become a mentor, simply fill out the appropriate questionnaire in the Get Connected section at marfan.org. Please remember to check any medical information you read on Facebook or Connect, or hear from your mentor, with your personal medical team.

LONN AND LINDA LORENZ MET THROUGH THE PENPAL SECTION OF CONNECTIVE ISSUES IN PRE-INTERNET DAYS WHEN THEY WERE JUST LOOKING TO MEET OTHER PEOPLE WITH MARFAN. a comfort level in making a connection with someone my own age who was experiencing similar things,” said Lonn. But it’s not just about making a love connection. He recommends that par- ents encourage their kids to reach out and find other kids like them—online and through the other opportunities offered by The Marfan Foundation. Linda found great value in being open about her situation. “Meet someone who has the same diagnosis as you do,” she said. “They are going to ‘get it.’ And it’s important to know that you are not alone.” See sidebar to learn how you can make connections in the community.

14 Marfan.org