- Twenty years ago, Grandma Lee Wilson died of ALS
- After her father was diagnosed earlier this year, Wilson decided to get tested for the gene herself
- Doctors told the 29-year-old that she had a 100% chance that she would one day have ALS; now she’s documenting both her new reality and her ongoing fertility journey online
At just 29 years old, Lee Wilson already knows she will one day develop ALS – just like her father and grandmother did.
Her paternal grandmother died of the neurodegenerative disease 20 years ago, in 2004, and her father was also diagnosed in May of this year.
It’s been a decade since the Ice Bucket Challenge dominated social media, and while the project to raise funds for amyotrophic lateral sclerosis research is no longer as viral, ALS is still a reality for an estimated one in 400 people.
Young father defying the odds of his ALS diagnosis says the disease is ‘no longer hopeless’
“We were [initially] said ALS is not hereditary, so we never worried about ALS,” Wilson tells PEOPLE, recounting the conversations they had after her grandmother’s diagnosis. But after learning her father’s prognosis, she decided to request genetic testing.
ALS, also known as Lou Gehrig’s disease, targets motor neurons in the brain and spinal cord, leading to deterioration of motor function. Most people with ALS will eventually develop partial or complete paralysis, and there is currently no cure for the disease. According to the Mayo Clinic, about half of people with neurodegenerative disease will die of complications within 18 months of diagnosis.
Before her father’s diagnosis, Wilson and her husband were trying to grow their family, which prompted her to start posting on TikTok. After experiencing two miscarriages before her father’s first symptoms of ALS, she began sharing her struggles online to find a community of others trying to conceive.
However, when she and her husband began to speculate that she might carry the ALS gene, they put their plans on hold as they continued with genetic testing. Wilson left her followers with a vague update, informing her audience that the couple had put their trip on hold while she cared for her father as his health continued to deteriorate (he also had cancer). But they were also waiting for her results.
“I got a call from the doctor’s office the day after my dad died, saying I had the gene,” Wilson shares. After consulting with a genetic counselor, her doctor confirmed that she had a repeat expansion of the ALS gene mutation and “my chances of having it were 100% at that point.”
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“I don’t think it’s hit me yet, to be honest,” admits Wilson. “I think I’m still in a state of shock.”
According to the ALS Therapy Development Institute, only about 15% of all ALS diagnoses are hereditary, but those who have the gene have a 50% chance of passing it on to their children.
In mid-August, after learning of her prognosis, Wilson posted an update to her followers, letting them know about this health update and the next steps in her fertility journey.
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Lee Wilson.
Lee Wilson/Tik Tok
“Instead of natural conception, my husband and I decided to do IVF so we could genetically test the embryos before implantation,” she explained to her followers in an August TikTok, noting that their decision to IVF could complicate potential preventative treatments.
Wilson admits she’s not entirely sure what her next steps are, though she has a consultation with a neurologist coming up that she hopes will bring more answers.
“I did a lot of research,” she says. “I think that’s something that helped me mentally. It was sad, but I think it’s important to learn more about it, especially if I’m going to deal with it personally.”
Reaching out to her online community could also help, she adds.
“I feel like the more people talk about it, the more awareness there can be, and the more the better,” says Wilson. “Obviously there’s no cure for it, so I’m just trying to do my part and help bring awareness to it.”
Categories: Trends
Source: HIS Education