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I am Mindy Uhrlaub – How I Talked to My Teens About My Genetic Status

an ALS gene carrier


It was hard not to tell my perceptive sons, now seventeen and fourteen, who were part of my support network. But I didn’t want to worry them and I didn’t want them to fear that they would develop ALS – especially since they couldn’t even be tested yet.  

How I Talked to My Teens About My Genetic Status

By Mindy Uhrlaub

In 2018, when my mom (Nanee) was developing symptoms of limb-onset ALS, I decided to get tested for the C90rf72 (C9) mutation, one of the few known ALS genes. Because my grandfather had died of ALS, it was obvious to me that there was a genetic component to the disease that was plaguing my Nanee. At the time I received my positive result, I’d already been schooled on how to deliver tough medical news to children. My husband, Kirk, had recently learned he had large B-cell diffuse lymphoma, and the therapist who we’d been seeing suggested that until any medical intervention for my husband became imminently necessary, we should not cause our kids undue stress that could harm them emotionally.  

When Kirk had to start chemotherapy, we told them. They were fourteen and twelve at the time.  Because they were already coping with the stress caused by Nanee’s ALS and Kirk’s chemo, I didn’t want to share my genetic information with them. Fortunately, Kirk responded to chemotherapy and has been cancer-free for some time now. However, Nanee’s health was quickly declining. With her deteriorating condition so obvious, I still didn’t want to share my own news. Nanee died in January of 2020 and it was a huge blow to our family. The last thing I wanted for my young sons to think was just because I had a genetic predisposition that I was going to die soon.  

Within a month of Nanee’s death, the Covid pandemic was upon us and although I’d been educating myself on ALS research and clinical trials, checking the I AM ALS clinical research dashboard and signing up to be put on waitlists for longitudinal studies, I couldn’t participate until there was a vaccine. After all, Kirk had just gone through chemo and I couldn’t risk infecting him with the coronavirus if I picked it up in a hospital. I decided to hold my genetic secret until I could see a neurologist in person and enroll in research. After all, how helpful would it be to know my genetic status if I wasn’t prepared to do something about it? A neurologist could tell me whether I had symptoms of ALS onset, whether I had any cognitive impairment, or if I had neuroinflammation.

It was hard not to tell my perceptive sons, now seventeen and fourteen, who were part of my support network. But I didn’t want to worry them and I didn’t want them to fear that they would develop ALS – especially since they couldn’t even be tested yet.  

Daniel Barvin, a friend and fellow C9 carrier, suggested that the longer I postponed outing my genes to my kids, the longer they could feel the freedom to be kids. They’d be blissfully reassured that their family was healthy and that they (and I) would live to a ripe old age. So I continued to keep the information to myself. 

Then I got vaccinated against Covid, and I made the decision to enroll in longitudinal research whenever I could. In April 2021, I had planned to fly to Mass General Hospital to participate in the DiALS study. This was a longitudinal study which would track my neurologic health, search for biomarkers, and keep an eye on my muscle strength and cognitive wellness over several years. It would also do an entire genome sequencing to determine if I had any other hereditary diseases. My Nanee had been gone fifteen months and Kirk was cancer-free for almost three years. My kids were seventeen and fifteen. Here’s how the conversation at the dinner table went:


“Guys, I’m going on a trip to Boston.”

“Why?” they asked.

“You know how Nanee had ALS? I recently learned that it’s the same disease that my Grandpa Milton died of. It can be passed down through generations.”

“Can you get it?” they asked. 

“Yes. I had a genetic test done and I carry the gene mutation that causes ALS.  It doesn’t mean that I’ll definitely develop the disease someday.”

They took it in for a minute, so I continued, “I’m going to Boston to donate some genetic samples and images for them to research Familial ALS.”

“Will they know if you’ll get the disease then?” they wondered.

“They can tell if I’m developing symptoms.”

“Good!” one of my sons exclaimed. The other asked, “Can we get ALS?”

“You guys have a fifty percent chance of having the gene, but kids don’t typically get ALS; it’s usually an adult disease. And even if you have the gene, you may never develop the symptoms.”

“Can we get tested?” they wanted to know.

“Not until you’re adults.”


Notice that I wasn’t panicky, hysterical or nervous. It was only the facts and I only told them what they needed to know. A medical intervention in the form of genetic samples being donated was happening soon and this was why. I closed with, “I’m doing this research so that there’s a cure for ALS. So you don’t have to get it. So I don’t have to get it. And I don’t plan to get it – ever.”

The conversation ended with them thanking me. So, I guess I did a good job delivering the news. I can’t say how anyone else should talk to their teenagers, but this way worked for my family.

Here are some suggestions to prepare to speak to your children about gene status:

  1. Create a support system around you. It may include your therapist, your partner, friends or other Familial ALS Members. The I AM ALS Familial ALS Social Hour is very supportive and a good place to build your support network.
  2. Connect with I AM ALS Community Support program to access resources and practice the conversation.
  3. Consider finding a mentor to help guide you through the process. The I AM ALS Peer Support Initiative can be helpful. The program connects those impacted by ALS to one another to provide unique support.
  4. Write a sample script. For example, if you know your kid will ask you something specific, like “What percent of C9 carriers develop symptoms of ALS?” it can be helpful to have answers to those questions at the ready. Make sure you cover everything you feel is important, even if the conversation gets emotional.

 

You might find these helpful:

Familial ALS Team

Join the team

Join the I AM ALS Familial ALS Social Hour!

Self Care


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