Most people in their twenties are worried about career changes, dating, or figuring out what they actually want to do with their lives.
Very few expect to suddenly suffer a stroke and learn they have a rare disease that many people have never even heard of. But for one woman, that became her reality.
At the age of 29, TikToker Jojo (@joesephineeeee) had a stroke, got diagnosed with Moyamoya disease, and had brain surgery. Now, it has been about six months since the operation.
According to Mayo Clinic, Moyamoya disease is a rare blood vessel condition that causes the carotid artery in the skull to become blocked or narrowed, reducing blood flow to the brain. The carotid artery is a major artery that brings blood to the brain.
The condition can lead to a ministroke or a stroke. It can also cause cognitive and developmental delays or disability. Moyamoya disease mostly affects children, but adults may have the condition as well.
The disease is found all over the world, but is most common in East Asian countries, particularly Japan, Korea, and China.
The scar from her surgery has healed quite a bit. It’s not visible because her hair is covering it. Her post-op care has consisted of CT scans and CT angiogram scans.
After moving from Texas back to Los Angeles and getting a new job, her health insurance is no longer in Texas, which was where she had the surgery, so she can’t follow up with her neurosurgeon and neurologist. She is in the process of transferring everything over to UCLA.
During her last CT scan, her neurologist said that her bypass surgery had failed because there is no blood flow through the artery that they reconnected it to.
Sign up for Chip Chick’s newsletter and get stories like this delivered to your inbox.
Her neurosurgeon is not concerned, but she is seeking a third opinion from her new doctor to try to figure it out.
“This past year has been full of change, like extremely so, but I’m looking forward to getting better and healing and hopefully keeping up to date with my Moyamoya and hoping that it doesn’t progress,” said Jojo.
In the comments section, many TikTok users talked about their own experiences with strokes and similar conditions, creating a wave of support.
“My aunt has Moyamoya disease, and it went undiagnosed until she was 49. It’s been such a journey, as so much of it is still not understood. I’m so glad to see you are healthy and doing well and wishing you the best in your recovery,” commented one user.
“I also had a stroke in my twenties. The recovery has been difficult, but you got this! Mine was caused by an AVM, so not Moyamoya but still a congenital condition,” shared another.
“I almost had a stroke when I was 29, too, but from a neck manipulation. My bilateral vertebral arteries were dissected in my neck to my brain. I’m so glad you’re okay!” added someone else.
By Emily Chan
Emily Chan is a writer who covers lifestyle and news content. She graduated from Michigan State University with a degree in... More about Emily Chan
