Lexi Reed 'Terrified' Calciphylaxis Will Return While in Remission: 'I Refuse to Let That Fear Control Me'

Lexi Reed announced in August that she was in remission from calciphylaxis, a rare condition that left her hospitalized and unable to walk or stand on her own for months

<p>Lexi Reed/Instagram</p> Lexi Reed

Lexi Reed/Instagram

Lexi Reed

Lexi Reed is trying to stay positive while knowing that there’s a chance her calciphylaxis could return.

On Monday, the fitness influencer posted a Q&A on her Instagram Story and responded to a follower who asked if she was still in remission from calciphylaxis. Calciphylaxis is a rare and serious condition in which calcium builds up in blood vessels and blocks blood flow to the skin, according to Cleveland Clinic. It can lead to open wounds and potentially deadly infections.

“Yes,” the 32-year-old said of being in remission. “My wounds are currently closed and praying daily they won’t reopen as they have before.”

“Honestly I’m really pretty terrified that my calciphylaxis will come back as it’s happened to others with my disease but I refuse to let that fear control me or waste any days/time while I’m feeling well again,” she continued. “Just gotta keep faith & take it day by day.”

<p>Lexi Reed/instagram</p>

Lexi Reed/instagram

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Reed also let her followers know that she’s been gaining her leg strength back while in remission, as calciphylaxis left her unable to walk or stand on her own for several months.

“Are you having any more weakness in your legs?” one person asked.

“Yes but thankfully I haven't fallen in a few months,” Reed shared. “I try to go to the gym when I’m with [husband] @discoveringdanny just in case it were to happen again & I couldn’t get up.”

The content creator said the weakness also prevents her from doing a lot of exercises at the gym without modifications, like squats, lunges and running.

“Better than it was but it’s just really limited to certain movements and trying to slowly build my strength back daily,” she said, adding in another post that “so many things were taken from me” during her calciphylaxis battle.

Lexi Reed/Instagram Lexi Reed
Lexi Reed/Instagram Lexi Reed

Related: Lexi Reed Shows More Scars from Calciphylaxis Battle: 'Proof That I’ve Been Fighting for My Life'

In July, Reed posted a video on Instagram of herself ringing a hospital bell after 59 weeks of calciphylaxis treatment. The long-awaited moment came more than a year after Reed announced that she was diagnosed with the rare disease in the painful aftermath of her kidney failure in May 2022.

She has often shared her journey with the disease on social media, making her ability to share the health update one that caused her to be "full of emotion."

"FIFTY NINE WEEKS OF WOUND CARE (13.5months) & THEYVE OFFICIALLY GRADUATED ME AS HEALED + I GOT TO RING THE BELL FOR WOUNDS HEALED 😭😭," she wrote at the time. "I’M CELEBRATING THIS MAJOR MILESTONE & putting all my faith that I'll continue to beat this disease."

Reed revealed in her video that her treatment involved caring for over 30 wounds and that her appointments initially lasted over five hours.

"This has been such a battle full of all emotions, but giving up has never been an option!” she added. “This video may show a big victory, but every daily struggle has been worth it & I'm so grateful to be where I am now! I've waited & prayed for this moment a LONG time despite it all!"

The following month, Reed announced that she was in remission. She shared the news with a video of her first time back in the gym since her diagnosis.

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