Real answers from 167 people in our patient registry who shared their experiences with VCP disease — when symptoms began, how daily life changes over time, and what helps along the way. Every person's path is unique. These charts show the range across our community, not a prediction for any one person.
Move the slider to the number of years since your (or your loved one's) first VCP symptoms. A marker will appear on every chart so you can see how others at the same point have answered.
Every chart on this page exists because community members shared their experiences. And it's not just joining that matters — updating your surveys over time is how we learn how VCP disease changes year to year, which is exactly the evidence researchers and the FDA need to help bring treatments to trial.
Most people in our registry noticed their first VCP symptoms in their 40s — but onset ranges widely, from the 20s into the 70s.
VCP disease is rare and often mistaken for other conditions, so a diagnosis can take time. Here's how long community members waited between first symptoms and their VCP diagnosis. The good news is that with wider genetic testing, recent diagnoses are happening more quickly.
A few members were diagnosed through family genetic testing before any symptoms appeared; they are not included in this chart or the statistics above. About a quarter of members were diagnosed in the same year their symptoms began — often through family genetic testing — which brings the typical wait down. Among members whose diagnosis came a year or more after symptoms, the typical wait was about 7 years.
Each dot is one survey response: how many years since that person's first symptoms (across) and their leg & mobility function score (up — from everyday tasks like walking, stairs, and standing up). 100% means no difficulty with any task; lower scores mean more tasks are hard or not possible. Many members have now completed surveys more than once — the thin lines connect the same person's responses over time, showing real individual journeys. The gold line shows the community average at each stage.
The same view for hands and arms — tasks like opening jars, buttoning shirts, and writing. Thin lines again connect one person's surveys over time. For many people, hand and arm strength stays stronger for longer than legs, though it varies.
For each activity, the bar shows how community members answered — from "no difficulty" to "unable to do." Use the filter to see answers from people at a similar stage of the journey to yours.
Activities come from validated Neuro-QoL questionnaires completed by registry members.
VCP disease is a "multisystem" condition — the same gene change can show up in different ways. Muscle weakness is by far the most common. Here's how many of our 136 symptom-survey members have been diagnosed with each condition.
Each dot is the age one member said that condition began for them. Muscle symptoms usually come first; bone, thinking, and motor-neuron changes — when they happen at all — tend to appear later.
Tools and supports are a normal part of the VCP journey — many members use them to stay active, independent, and safe. Among members asked about mobility aids:
BiPAP/CPAP supports breathing during sleep and is commonly recommended when breathing muscles weaken — many members say it noticeably improves sleep and energy. Newer registry surveys ask these questions, so the number of responses is smaller.
A hopeful pattern in our data: even as physical health gets harder, most members rate their mental health and overall quality of life as good or better. Living well with VCP disease is possible — and our community proves it.
Fatigue is one of the most common — and least visible — parts of VCP disease. Pain levels vary widely from person to person.
Members were asked how often, in the past week, they noticed difficulties with concentration, attention, or planning. If you notice changes, mention them to your care team and they may be able to help.
Some members complete standardized clinical rating scales that doctors use to track function. Unlike the everyday-activity questions, these produce a single overall score. Higher scores mean more preserved function. These come from members who have completed the full clinical scales, plotted over disease duration.
The IBM-FRS is a 0–40 point scale spanning 10 everyday functions (swallowing, dressing, walking, stairs, and more). It was designed for a related muscle condition and is often used to follow VCP-related muscle weakness. Each dot is one survey and the lines connect repeat surveys from the same person. The average line and the median above are person-weighted — each member's repeat surveys are averaged together first, so people who survey more often don't count more heavily.
The ALS-FRS-R is a 0–48 scale covering movement, speech, swallowing, and breathing. Because VCP disease can sometimes involve motor-neuron and breathing changes, some members track this scale too. As with the IBM-FRS, each dot is one survey and the lines connect repeat surveys from the same person, while the average line and median above are person-weighted so frequent responders don't count more heavily.
These scales are most powerful when members complete them more than once over time, so the lines connecting repeat surveys can grow. If you haven't completed your clinical scales recently, updating them adds to this picture — another reason that finishing your surveys makes a real difference.
VCP disease is caused by many different changes ("variants") in the VCP gene. R155H is the most common worldwide and in our registry. Knowing your family's variant helps researchers connect the dots.