Surprised to Connect with So Many with My Rare Disease: Meet @astaingegerdm

Member Spotlights feature interviews with fellow Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.

ROSEMARY: What brought you to Mayo Clinic Connect? What motivates you to take part in the community?

@astaingederdm: Being a Mayo Clinic patient for eight years, I get periodic news updates from Mayo. In one, Mayo Clinic Connect was mentioned. I looked through the different groups and was surprised to see a discussion on median arcuate ligament syndrome (MALS) in the Digestive Health group. This is a rare condition, and I had been treated for it, not knowing there were so many others living with it. 

ROSEMARY: What about Connect makes you feel comfortable to share and be open with the community? 

@astaingederdm: The members of the MALS group have the same or similar conditions, and they have encountered different difficulties. We can share our experiences, and in doing so, help each other. I am a problem solver and like sharing my thoughts with the community.

ROSEMARY: What groups do you participate in?

@astaingederdm: I primarily participate in the Digestive Health group, but also take part in conversations in the About Kids & Teens, Autoimmune Diseases and Chronic Pain groups. 

ROSEMARY: Tell us about a meaningful moment on Connect. 

@astaingederdm: There have been many meaningful moments on Connect when I’ve exchanged experiences and advice with other Connect members in different groups. I am grateful when someone likes my post as well as when someone asks me to elaborate on recommendations I posted.

I was surprised and flattered when I got the offer to become a mentor. This is actually something I had envisioned to be part of my retirement. I have a past in pediatrics, where I spent a lot of time educating and talking to parents and children. I never wanted to force my opinion on someone else, but merely share my knowledge as guidance.

ROSEMARY: What surprised you the most about Connect?

@astaingegerdm: So many members have been through so much while trying to get an accurate diagnosis and treatment, and they are learning to advocate for themselves. I am happy to learn from them.

ROSEMARY: What energizes you, or how do you find balance in your life? 

@astaingederdm: To be honest, I don’t have much energy these days. My illnesses and treatments have drained a lot of energy, even now when I have been “cured” for three years. However, my adult children don’t allow me to sit back feeling old! Two of them live with us, and the oldest one lives in Sweden and has two young children. When they were growing up, I was always a part of their daily life. I still am through sharing many of their activities, including frequent calls across the ocean. 

ROSEMARY: Tell us about your favorite pastime or activity.

@astaingederdm: I love playing tennis. I took it up later in life. Now, it’s social tennis, and I get to meet other women, most of us retired. I find it very invigorating. I have played in the United States Tennis Association (USTA), also, and might do so again. Other important parts of my life are my dogs! I have a Bernese mountain dog and a Dachshund, both attached to me like Velcro.

ROSEMARY: Do you have a favorite quote, life motto or personal mantra?

@astaingederdm: “Everything will work out.” 

That way of thinking has helped me through my life, and I teach my children to do the same.

 ROSEMARY: What do you love about where you live or vacation?

@astaingederdm: We now live in vacation paradise! After living in New York and struggling through those winters, we moved to Hilton Head Island, South Carolina. We started coming here on vacation when my son was a newborn, 32 years ago, and we decided to move here after retirement. We like to be able to get to the beach in a few minutes. Nature here is beautiful. Maybe I could do without the alligators that sunbathe on our lawn, though!

ROSEMARY: Puppies or kittens?

@astaingederdm: Definitely dogs! We have two and our daughter has one. They are elderly. My current Bernese mountain dog did not leave my side the years when I suffered the most with my illness. He would check my vital signs: breathing, body temperature and movement. After I finally finished all my treatments, he somehow sensed that I was well again.       

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