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Cerebral Small Vessel Disease: Learn About One Person’s Story of Early Dementia, Misdiagnosis, and Living With CSVD

Cerebral small vessel disease (CSVD) is common among older adults, but its causes and connections to other brain diseases like Alzheimer’s aren’t well understood. Julie shares her experience of getting a diagnosis, struggling to find treatment, and the daily challenges of living with CSVD.

Julie Turner was 54 when she received a life-changing brain disease diagnosis. For years prior, Julie experienced problems with her memory and thinking clearly. After decades of working in healthcare, she started forgetting the names of basic equipment and how to operate machines she had previously taught others how to use. Eventually, Julie’s condition worsened and began to impact her movement and ability to speak. After several misdiagnoses, doctors finally concluded she had cerebral small vessel disease (CSVD). Only after getting an accurate diagnosis could Julie start effectively treating her condition.

We spoke with Julie about how CSVD has impacted her life, from her initial struggle to get a diagnosis to searching for effective treatments and learning how to manage her symptoms.

What is Cerebral Small Vessel Disease (CSVD)?

CSVD is an umbrella term for a variety of conditions resulting from damage to small blood vessels in the brain. In most cases, CSVD is caused by the narrowing or obstruction of small blood vessels in the brain due to inflammation and/or a buildup of misfolded proteins called plaques. This chronic damage can starve brain cells of oxygen and cause internal bleeding, which in turn can damage other nearby brain cells. 

Doctors know that impaired blood flow to the brain caused by CSVD can result in vascular dementia. However, recent research shows that CSVD is also associated with a higher risk (or increased severity) of other forms of dementia, including Alzheimer’s disease. More research is needed to fully understand the connection between these two diseases.

Early Symptoms of CSVD

Mild, early cases of CSVD tend to not have especially noticeable symptoms, and many of the early symptoms people do notice are often easily confused with the normal effects of aging. This presents a challenge—many people do not get a diagnosis until their condition has progressed to the moderate or severe stages and more significant brain damage has occurred. Later stages of CSVD can involve a variety of symptoms, including cognitive impairment and dementia, issues with walking and balance, depression, strokes, and nervous system problems (such as slurred speech and difficulty swallowing).

In Julie’s case her symptoms started with difficulty thinking clearly, trouble with her memory, and being tired more than usual. As her condition progressed, she began to experience nervous system issues, trouble walking, strokes, and even the early stages of dementia. Perhaps the most challenging part for Julie has been her struggles with speaking, reading, and writing. “Communicating is my biggest problem with this disease,” she says. Only after getting a correct diagnosis could Julie effectively address some of her symptoms.

Getting a Diagnosis and Common Misdiagnoses

CSVD is generally diagnosed using an MRI scan to check the brain for bleeding of the small blood vessels, damage to white matter, and evidence of small strokes. Because the majority of people experiencing serious CSVD symptoms are usually in their 70s or older, younger people often have a harder time getting a correct diagnosis. That’s exactly what happened to Julie. 

She explains, “I was initially diagnosed with fibromyalgia, and then they decided it was MS [multiple sclerosis]. I was actually treated for MS for a short time because I was declining so quickly.” 

At the MS clinic, doctors eventually realized her condition was vascular (impacting the blood vessels), and something clicked for Julie. “My grandmother died of vascular dementia. My grandfather died of Alzheimer’s,” she says. “So I’ve always in the back of my head thought, ‘there’s a possibility I’m going to get one of those.’” After years of living with CSVD, Julie was finally diagnosed at the age of 54.

How Do You Treat CSVD?

Current treatment options for CSVD are limited. They generally focus on reducing risk factors and avoiding or delaying complications like stroke and dementia. Individuals each have different risk factors, so personalized treatment regimens are the most effective. Treatment may include medications to reduce cholesterol, regulate glucose levels, and lower high blood pressure. Healthy lifestyle habits such as regular exercise, eating nutrient-rich foods, and quitting smoking are often recommended as well. Some symptoms, such as nervous system issues and depression, may be addressed with specialized therapies.

Julie currently takes several medications, including a blood thinner, blood pressure medication, and cholesterol medication. She’s been working with a speech therapist who has been helping her regain some of the language skills she lost in the years before she got an accurate diagnosis. “My speech is getting better,” says Julie. “A year ago, I couldn’t have said a full sentence. I’m relearning how to read, write, and talk.” She also sees a therapist for mental health support.

The Challenges of Living With CSVD

Julie faces many difficulties navigating life with CSVD. Her trouble thinking clearly and communicating makes it hard to express herself effectively when speaking with doctors and specialists. Problems with walking and balance also have a daily impact, making it hard to exercise and spend time outdoors. The additional risk of falling also means she must avoid living situations with stairs and hardwood floors.

For Julie, one of the most challenging consequences of CSVD was no longer being able to work. Julie entered the healthcare field as a young, single mother, working her way through school and eventually becoming a nurse. Her career brought her joy for decades, and she loved being able to help people every day. But CSVD’s impact on her memory and thinking skills eventually meant she couldn’t safely do her job. 

“I loved my job for 40 years and was forced to quit,” she says. “That was hard for me, to lose my whole career.”

It’s vital for people with brain diseases like CSVD to have a strong support network. Julie notes that she lost some people in her life due to the added challenges her condition created. This led not only to more difficulties navigating daily life and care, but also worsening depression. Feeling isolated and depressed is unfortunately all too common for people experiencing chronic illness, and it’s essential to be able to rely on caregivers, family, friends, counselors, and support groups.

Why More Research is Crucial for Brain Diseases Like CSVD

Julie wishes that we understood more about how CSVD works and that there were better resources for people like her trying to navigate various symptoms and care. Much of the information that is available focuses on people in older age groups with later stages of the disease, but she hopes that in the future there will be more studies focusing on younger people with early-onset symptoms. 

“I wouldn’t wish this on anyone. If they could stop it or slow [the progression], or find it when you’re younger and prevent it from coming on so early… I don’t know anyone who wouldn’t want that to happen,” Julie says. Further studies can also educate people and help spread awareness about what CSVD looks like in the early stages, aiding in earlier diagnosis and treatment.

Because CSVD shares symptoms—and potentially causes—with other neurodegenerative brain diseases like Alzheimer’s, Parkinson’s, and MS, a discovery related to one disease can have a ripple effect on treatments and diagnosis for all the others. That’s why ongoing research across the full spectrum of brain diseases and disorders is so important. “If you cure one [disease], it gives everyone else hope,” says Julie. “And a lot of times with this disease, that’s all you have.”

The American Brain Foundation is committed to finding cures for brain diseases. Donate today to make a difference. With your help, we can all experience life without brain disease.