Words of Encouragement: Sharing the Journey to Diagnosis

World FTD Awareness Week, sharing the journey to diagnosis header

World FTD Awareness Week 2022 began on Sunday. To mark this yearly event, AFTD asked people to share their stories of obtaining an FTD diagnosis on social media. Members of our community took to Facebook, Twitter, and Instagram to share their experiences and encourage others to #AskAboutFTD.

“Around the time I was in high school, my dad started exhibiting a very odd stutter,” Mason G. shared on Facebook. “A man who never had trouble finding his words was suddenly forgetting the simple things. At first, we thought it was just age. Everyone does this when they get older.”

But the difficulties Mason’s father faced only continued to get worse; he eventually began to forget things like his keys and wallet.

“By the time I was in college we finally figured out what was wrong. FTD with progressive primary aphasia (PPA),” Mason said. “This meant not only was my dad going to forget things, but he would reach a point where communicating with us and others would become impossible. FTD comes with ALS symptoms too. He would eventually be bed bound by the end of his life. Followed by being unable to speak or be spoken too.”

Anna K. told her story as well, sharing that she sought a diagnosis for her husband, Craig.

According to Anna, he began to show drastic changes in his personality. Craig lost interest in almost everything he previously liked, developed repetitive behaviors, lost his confidence, and suffered from a loss of short-term memory, among other changes.

“Craig was diagnosed with bvFTD in 2019 at the age of 44,” Anna shared. “We began noticing symptoms the Fall of 2018. We lost him 3 years and 3 months from diagnosis at age 48.”

Craig’s doctor believed he was experiencing depression and put him on medication to treat it. As his symptoms progressed, Anna and Craig were referred to a neurologist who ordered an MRI.

“The call from the neurologist was within a day or so, delivering the news that Craig’s frontal & temporal lobes were showing significant signs of atrophy,” Anna said. “When asked what that meant, he threw out a few possibilities that I jotted down on a piece of paper and then forwarded me to the scheduler to set up a full neuro psych exam and an appointment to discuss findings. I knew after googling a few of the notes I’d taken that we weren’t dealing with anything we ever could have imagined. All my searches came back with phrases that said things like progressive, terminal, no treatment, no cure, irreversible, cruel.”

While there aren’t yet approved disease-modifying treatments for FTD, the number of drugs and gene therapies being tested is growing. Many trials are actively recruiting, and more are on the way. We are getting closer to viable FTD diagnostic tools and therapies each day. Visit AFTD’s website to learn more about studies seeking participants.

You can also do your part in helping to raise crucial awareness during this World FTD Awareness Week by sharing your own firsthand experiences in obtaining a diagnosis. If you decide to post to social media, make sure to use the hashtags #AskAboutFTD, #AskMeAboutFTD, and #DiagnoseFTD.

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